Received: 4 August 2020 Revised: 17 July 2021 Accepted: 19 July 2021

DOI: 10.1111/cch.12901

REVIEW ARTICLE

Family-centred care in early intervention: A systematic review

of the processes and outcomes of family-centred care and
impacting factors

Elaine McCarthy1,2 | Suzanne Guerin1

1
UCD School of Psychology, University
College Dublin, Dublin, Ireland
2
Health Service Executive, CHO Area 5,
Dublin, Ireland
Correspondence
Suzanne Guerin, PhD, UCD School of
Psychology, University College Dublin,
Newman Building, Belfield, Dublin 4, Ireland.
Email: suzanne.guerin@ucd.ie
Funding information
Health Service Executive
Abstract
Family-centred care (FCC) has been established as a best practice model for child dis-
ability services internationally. However, further empirical support is required to
explore the operationalization and efficacy of FCC, in the absence of a universal prac-
tice model. This review aimed to identify the key processes and outcomes of FCC in
early intervention (EI) settings and the factors that impact FCC. A systemic review
was conducted exploring the processes and outcomes of FCC delivered to children
predominantly aged 0–6 years with disabilities/suspected disabilities and families as
part of EI or early services. The search procedure was informed by the Preferred
Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines
(Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke
(2006, 2014). Data were presented as per the standards for reporting qualitative
research (SRQR; O'Brien et al., 2014). Forty-two studies were included. The majority
(90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes.
Processes were largely reported as qualitative data and/or subscales of the Measure
of Processes of Care (MPOC; King et al., 1995), which were subsequently collated.
Findings indicated eight key operational processes and corresponding outcomes. Var-
iables that hinder or facilitate FCC included family/professional characteristics, fam-
ily/service resources, and parent attitudes, engagement and agency. FCC was largely
conceptualized as the application of services to children and their families. Critical
perspectives on FCC are discussed. It is hoped this research will contribute to the
development of a framework of FCC in EI to inform services provided to young chil-
dren with complex needs and their families and future research.

KEYWORDS
caregiving processes, child and family outcomes, child disability, early intervention, family-
centred care

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any
medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
© 2021 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.

Child Care Health Dev. 2022;48:1–32. wileyonlinelibrary.com/journal/cch 1

2 MCCARTHY AND GUERIN
1 | I N T RO DU CT I O N
Family-centred care (FCC) is widely established as the standard model
of professional practice in early intervention (EI) and paediatric hospi-
tal settings (Espe-Sherwint, 2008). Positioned as part of the family
systems paradigm, FCC has theoretical origins in both empowerment
and help-giving philosophies (Dempsey & Keen, 2008), with contem-
porary theories taking a social systems approach to EI to account for
the interactive relationships between the child and family, and wider
ecological systems (Dunst & Trivette, 2009). Described as partnership
approach to healthcare, FCC is premised on the belief that the child's
well-being and care needs are best supported within the family con-
text through effective collaboration with professionals and services
(Neff et al., 2003). Significantly, a central tenet of FCC is the assump-
tion that the processes of care delivery are as central to successful
child and family outcomes as the specific characteristics of clinical
interventions delivered (Espe-Sherwint, 2008; Henneman
Cardin, 2002). FCC is therefore conceptualized as a philosophical
approach to paediatric care characterized by key principles and prac-
tices, rather than the delivery of formal interventions/treatments
(Rosenbaum et al., 1998). Core principles include clinical flexibility,
respect and dignity for families' perspectives, knowledge and charac-
teristics, effective information sharing by professionals to families
(general and specific), partnership and collaboration between parties
to support decision making, and coordinated and comprehensive care
delivery (Dunst, 2002; King et al., 1995; King,
Rosenbaum, 2004).
Despite a well-established conceptual literature base and wide-
spread adoption of this model, critics have argued that limited rigor-
ous evidence supports the implementation and efficacy of FCC in
practice (Shields, 2015; Shields, Zhou, Pratt, et al., 2012; Shields,
Zhou, Taylor, et al., 2012). Shields (2015) asserts that a number of
methodological difficulties make evaluating FCC challenging. Chal-
lenges are attributed to high expenses and logistical issues associated
with running studies within the context of non-standardized
healthcare, while the inability to assign participants to true control
conditions also results in the contamination of results (Shields, 2015).
As a result, research on FCC has focused principally on examining the-
oretical links between the processes of delivery and positive out-
comes for children and families, rather than evaluating the efficacy
and purity of FCC as a standardized intervention model. In examining
these care processes, quasi-experimental research has suggested that
FCC help-giving is linked to improved child and family outcomes and
increased service satisfaction in paediatric disability and healthcare
settings (e.g., Dempsey & Keen, 2008; Dunst et al., 2007; King,
Teplicky, et al., 2004; Law et al., 2003).
The current study is informed by two key reviews of the empirical
FCC literature (Dempsey & Keen, 2008; Dunst et al., 2007) that pre-
sent evidence-based frameworks detailing the processes and out-
comes of FCC delivery. Explicitly, processes are defined as FCC
service inputs, supports, experiences and resources provided whereas
outcomes are labelled as the positive effects of this care such as par-
enting capacity, child development or service
Key messages
• The translation of FCC from theory to practice has been
challenging, despite a robust theoretical base and evi-
dence for the efficacy and effectiveness of family-centred
practices. In the absence of a universal model of FCC, fur-
ther empirical support is required to examine the
operationalization of this model in EI.
• Family-centred processes extracted included both quali-
tative data and/or the subscales of the MPOC (King
et al., 1995). These data were collated due to similarities
in content.
• Review findings are synthesized and presented as a visual
overview of the processes and outcomes of FCC in EI
and factors that promote or hinder service delivery.
&
• FCC was primarily conceptualized in the literature as the
application of care with corresponding outcomes and
confounding variables. This paper supports a need for
further research on the interactive and moderating role
of variables in FCC and introduces a thesis supporting
FCC as an ecological model. Critical perspectives on the
measurement of FCC are also discussed.
King, &
(Dunst, 2005). Furthermore, FCC is conceptualized as the effective
balance of both relational caregiving (i.e., expert clinical skills and
beliefs about family capabilities) and participatory caregiving
(i.e., flexible and responsive practice, and engaging families in the care
process) inputs (Dunst & Trivette, 1996).
1.1 | Focus of the present review
Despite a firm conceptual foundation, it is asserted that further empir-
ical support is required to examine the efficacy and effectiveness of
the processes and outcomes of FCC practices within EI or early ser-
vices disability settings. This review focuses specifically on early
healthcare services for children predominantly aged 0–6 years with or
at risk of being diagnosed with complex disabilities/delays and their
families. Empirically supported models of FCC attempt to summarize
the delivery of FCC to children with disabilities and their families in
the absence of standardized clinical practice guidelines (Dempsey &
Keen, 2008; Dunst et al., 2006, 2007). These present FCC as a unidi-
rectional process mediated by family control appraisals and signifi-
cantly do not account for factors such as the mutual and interactive
process of the therapeutic alliance between the professional, child
and family at a micro level. The reciprocal influence of social organiza-
tions, wider systems and governing structures such as policy, manage-
ment and budget constraints are also not represented. This provides
further rational for the synthesis of the EI literature into an evidence-
satisfaction based ecological model, which takes into consideration
MCCARTHY AND GUERIN
interrelationships at various systemic levels. This systematic review
therefore sought to collate and critically appraise the existing empiri-
cal literature to explore the links between the processes and out-
comes of FCC with a focus on the child/family/professional and wider
organizational and social factors.
Specific research questions examined:
• What processes and outcomes are associated with FCC in EI set-
tings in the empirical literature?
• What are the factors and experiences that impact the delivery of
FCC EI services?
• How are child and family outcomes measured empirically and clini-
cally in family-centred EI settings?
2 | METHODS
The systematic review was informed by the Preferred Reporting Items
for Systematic Reviews and Meta-Analyses (PRISMA) checklist
(Moher et al., 2009). It was formally registered with the International
Prospective Register of Systematic Reviews (PROSPERO)
(CRD42017067453) in advance of conducting data searches.
2.1 | Search strategy
Based on key reviews on FCC (e.g., Dempsey & Keen, 2008; Dunst
et al., 2007; Shields, Zhou, Pratt, et al., 2012; Watts et al., 2014), the
following electronic databases were systematically searched:
• MEDLINE (Proquest)
• PsycINFO (Proquest)
• ERIC (Proquest)
• Sociological Abstracts (Proquest)
• EMBASE (Elsevier)
• CINAHL Plus (EBSCO)
The search strategy was informed by and adapted from published sys-
tematic reviews on the FCC of children with disabilities (Dempsey &
Keen, 2008; Dunst et al., 2007) and children in paediatric hospital set-
tings (Shields, Zhou, Pratt, et al., 2012; Shields, Zhou, Taylor,
et al., 2012; Watts et al., 2014), in addition to the outlined aims. The
initial search strategy reflected a broader study on the processes and
outcomes of FCC delivery to children/young people with disabilities
aged 0–18. The review however was subsequently narrowed at the
title and abstract screening phase to include only papers on the FCC
of young children with disabilities/suspected disabilities (predomi-
nantly aged 0–6 years) and their families within early services, due to
the high volume of papers not in line with the aims of the review.
The primary search items included the following terms and their
variants: ‘family-centred care’ (family-centred practice, family-centred
help-giving, family-centred services, professional–family relations);
child (infant/toddler/teenager); and disabilities (handicap, impairment,
3
retardation). Both English and American spelling were incorporated,
with Boolean operators ‘AND’ used to join search items and ‘OR’
used to search synonyms/variations. A search of terms in both paper
titles and abstracts was undertaken. A sample search strategy for
MEDLINE (Proquest) is presented in Table S1.
2.1.1 | Inclusion/exclusion criteria
Eligibility criteria were informed by Dempsey and Keen's (2008) sys-
tematic review, with inclusion/exclusion criteria presented in Table 1.
The ECLIPSE method was also utilized, with inclusion criteria specified
outlining the expectations of this review, client population, service
location, research impact, professionals and service type (Wildridge &
Bell, 2002).
2.1.2 | Search procedure
The search was run initially on 28 June 2017 and then repeated on
26 February 2021. Search findings were initially imported into
referencing management software EndNote. References were then
imported into the screening and data extraction software tool
Covidence, where duplicate analysis was conducted. The screening of
selected papers was undertaken in two stages that consisted of both
title and abstract, and full-text screening. Studies were initially
reviewed liberally (title and abstract phase) and then more conserva-
tively at the full-text review stage.
All titles and abstracts were reviewed by two reviewers. The first
author screened 100% of titles and abstracts, while double screening
was conducted either by fellow PhD students or the second author.
Discrepancies were discussed and resolved where possible, while an
additional reviewer resolved any outstanding disagreements and
queries. When there was an unclear disagreement (i.e., a paper
deemed as possibly appropriate), it was included for full-text
screening.
In the full-text screening stage, all papers were read in full by two
reviewers who discussed any disagreements. Due to differences in
the make-up of early years paediatric disability services in the litera-
ture, liberal inclusion criteria were applied in relation to the disability
service under review, to include multidisciplinary and unidisciplinary
disability services, and university designed/delivered programmes.
Referral to a third reviewer resolved disagreements.
2.2 | Data extraction
A data extraction protocol was guided by the templates of the Joanna
Briggs Institute (JBI) Experimental/Observational Studies Data Extrac-
tion Form and the JBI Qualitative Assessment and Review Instrument
Data Extraction Form for Interpretive and Critical Research
(JBI, 2014). Extracted data items are reported in Table 2. The data
extraction form was piloted on three random papers and subsequently
4 MCCARTHY AND GUERIN

TABLE 1 Full-text inclusion/exclusion criteria TABLE 2 Data extraction items

Inclusion criteria General information: Author(s), title, year of publication, study

aims
1. Expectation: The processes and outcomes of family-centred care
(FCC) delivery. Study design: General information, specific information

2. Client: Children predominantly >6 years with disabilities Study characteristics: Service context, disability population, study
(intellectual, physical and sensory) and their families. participants

3. Location: Community, hospital and university settings. Instruments used: Standardized and non-standardized

4. Impact: Papers must make explicit reference to FCC and the processes Service inputs/FCC Service description, intensity of support,
and/or outcomes of FCC delivery. This includes empirical papers that processes: processes of care
evaluate specific services/interventions with an FCC model. Study outputs/FCC Outcome measures, FCC outcomes
Processes and outcomes of FCC include: outcomes:
• Service delivery processes (e.g., relational caregiving practices,
Factors that impacted Reported moderating and/or mediating
participatory caregiving practices and frequency/duration/intensity
FCC: variables
of support).
• Family control attributions (e.g., locus of control; self-efficacy). Strengths/limitations: Reported and observed
• Child and family outcomes (e.g., child development, parent well-
Abbreviation: FCC, family-centred care.
being, parenting capacity, parent empowerment, child/family
satisfaction with FCC and child/family demographics).
5. Professionals: Clinical therapists/professional caregivers of children
with disabilities and their families. Including but not exclusive to T A B L E 3 Results of ‘Fatal Flaws’ quality assessment of
paediatricians, nurses, psychologists, speech and language
qualitative research, adapted from Dixon-Woods et al. (2006)
therapists, occupational therapists and physiotherapists.
6. Service: EI or early years paediatric disability services/interventions Appraisal criteria Yes
(children predominantly 0–6 years). Are the aims and objectives of the research study (n = 42, 100%)
7. English language only. clearly stated?

8. Peer review publications.
9. No date restrictions.
Exclusion criteria
1. Publications that deal with FCC of children/young people with
mental health issues.
2. Publications that deal with FCC of children/young people with
illnesses/health conditions however do not specify if child has a
disability/neurodevelopmental difficulty.
3. Non-empirical papers (i.e., opinion pieces/editorials/experiential
pieces not including case studies and qualitative research).
4. ‘Grey literature’ (i.e., conference proceedings, abstracts and poster
presentations).
5. Studies with an FCC nomenclature however lack sufficient
conceptual or practical evidence of FCC principles in practice or
evidence of the processes and outcomes of FCC delivery.
6. Theoretical papers that discuss/critique/describe FCC delivery
model generally.
7. Publications not informed by FCC principles.
8. Non-English language publications.
9. Non-peer review publications.
Abbreviation: EI, early intervention.
amended in advance of data extraction. Data were fully extracted by
the first author. To ensure the quality of data extraction, 20% of
papers from the first search were randomly selected and validated by
a second reviewer (master's student in psychology), with patterns of
agreement/disagreement reviewed and clarified. The categorization
of full/partial agreement corresponded to complete agreement
between both reviewers or partial agreement that corresponded to
overlapping data. Disagreement reflected complete divergence in
Is the research design clearly specified and (n = 18, 42.9%)
appropriate for the aims and objectives of the
research?
Do the researchers display enough data to support (n = 41, 97.6%)
their interpretations and conclusions?
Do the researchers provide a clear account of the (n = 42, 100%)
process by which the findings were produced?
Is the method of analysis appropriate and (n = 35, 83.3%)
adequately explicated?
extracted data. This process revealed a satisfactory full/partial agree-
ment rate of 85.5%.
2.2.1 | Quality appraisal, risk of bias and
methodological issues
Due to the lack of rigorous empirical research in the FCC literature, a
low threshold quality appraisal tool (Dixon-Woods et al., 2006) was
employed. A requirement of four out of five endorsed criteria
was deemed an eligible cut-off for inclusion, and where a criterion
was partially achieved or could be derived from the text, this was con-
sidered acceptable. The methodological quality of selected studies
was examined by the first author in the first search and the second
author in the second search. Twenty per cent of papers in the first
search was validated by a second reviewer (master's student in psy-
chology), resulting in a satisfactory full/partial agreement rate (96.7%).
All selected studies met the quality criteria for inclusion in this review
(see Table 3). The quality appraisal revealed one area of concern in
MCCARTHY AND GUERIN
relation to the clear specification of research design, with the majority
of papers failing to explicitly report this information. This information
had to be inferred from the description of methodological procedures
and methods of analysis employed. Reported strengths and limitations
of each paper were also extracted to contribute further to the overall
quality assessment.
2.3 | Data synthesis
Data synthesis occurred over two phases. Characteristics of selected
studies were compiled. A more detailed narrative analysis on the
design of empirical studies, and the processes and outcomes of care,
was conducted using thematic analysis (Braun & Clarke, 2006, 2014)
(including inductive and deductive components) to determine key pat-
terns and trends on FCC. Codes were initially generated for all
selected papers by the first author and arranged to create candidate
themes. These were informed by key reviews (Dempsey &
Keen, 2008; Dunst et al., 2007), in addition to new trends identified
during this process. This process was replicated by the second author
FIGURE 1 PRISMA 2009 Flow Diagram
5
for a random selection of papers, with convergences and divergences
explored for the purpose of analysis.
3 | RE SU LT S
Results of the search process outlined by Moher et al. (2009) are pres-
ented in Figure 1, with 42 empirical studies identified for final
inclusion.
3.1 | Study characteristics
An overview of the characteristics of selected studies is presented in
Table 4. Representing the two-stage search, Studies 1–30 were iden-
tified in 2017 and Studies 31–42 were selected in 2021. Most studies
included a community-based sample availing of/providing family-
centred paediatric disability services across a variety of settings, with
some also including hospital and education contexts. The majority of
studies focused on public disability services (n = 25, 59.5%) and a
 6

TABLE 4 Overview of studies included in systematic review

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
1. Arnadottir and Iceland Children with physical • Parents of children 88 (20, 0–6 years) (Q) Multidisciplinary Mixed methods Standardized:
Egilson (2012) disabilities ranging with physical 6 (FG) paediatric disability (questionnaire and • MPOC-20—Icelandic
from 2 to 18 years. disabilities ranging in services provided to focus group)—Quasi- translation
age from 2 to 18 children with physical experimental design (Halldorsdottir &
(some data on children disabilities (public Birgisdottir, 2006).
2 < 5 years reported service). Non-standardized:
separately). • Demographic
questionnaire.
• Information about
functional status
and severity of
impairment,
assigned
classification in line
with the Gross
Motor Function
Classification
System (Palisano
et al., 2007;
Rosenbaum
et al., 2008) and
Manual Ability
Classification
System (Eliasson
et al., 2005).
2. Brotherson USA Children aged 0–3 years • EIT professionals 92 (P) EI disability services Quantitative (pre and Non-standardized:
et al. (1993) with disabilities. represented by seven 22 (FM) serving predominately post)—Quasi- • Pre and post checklist
disciplines (nursing, rural families (public experimental design to assess professionals
occupational therapy, service). self-reported
physical therapy, knowledge of 16
psychology, social training competencies.
work, early childhood • Workshop evaluations.
special education, • No instruments
speech and language) administered to family
and included members.
administrators,
consultants, direct
service providers and
other (including
university faculty and
students).
• Family members.
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
3. Bruder and USA Children aged 0–3 years • Parents and primary 346 Individuals with Quantitative— Non-standardized:
Dunst (2008) with disabilities, caregivers of children Disabilities Education Correlational design • Demographic
multiple disabilities, aged 0–3 years with Act (IDEA) Part C EI questionnaire.
MCCARTHY AND GUERIN

global developmental identified disabilities programmes (public • Child disability status.

delays, delays in one or developmental service). • Service coordination
developmental delays in EI model, length and
domain or children at programmes. frequency of contact
risk for delays. between stakeholders.
• Service coordinators'
family-centred
practices.
• Extent to which
service coordinators
provided different
services to family and
children.
4. Carter and UK Children aged 0–3 years • Families. 43 The Blackpool Early Qualitative—employing Non-standardized:
Thomas (2011) with disabilities. • Key workers. Support Pilot mixed methods (face- • Face-to-face parental
• Key stakeholders Programme, one of to-face survey on families'
(representing the 45 Early Support questionnaires, experiences and
education, social care, Programme Pathfinder interviews and perceptions from pre-
acute healthcare, projects implemented workshops)— referral to assessment
community-based by the UK Descriptive design and diagnosis etc.
healthcare and Government as part of • Email survey on key
voluntary care). an initiative to workers' and
improve EI care stakeholders'
(public service). perspectives on
services and their role
within it.
• Appreciative face-to-
face narrative
interview with parents
and key workers on
experiences and
contribution of
service.
• Appreciative
workshops with
parents, key workers
and stakeholders.
Singapore 310 (Q) Standardized:

(Continues)
7
 8

TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
5. Chong Children aged 0–6 years • Parents of children 70 (FG) Multidisciplinary EI Mixed methods • MPOC-20 (King, King,
et al. (2012) with moderate to aged 0–6 years with programmes for (questionnaire and & Rosenbaum, 2004)
severe disabilities. disabilities/suspected Infants and Young focused groups) with a Chinese
disabilities receiving EI Children (charity and Descriptive and translation provided
services. public funded exploratory design for 5% of parents.
services). Non-standardized:
• Demographic
questionnaire.
• Focus group on the
experiences and
expectations of
parents and what
aspects of the
programme were
helpful and needed to
be improved.
6. Dall'Alba Australia Children 0–6 years with • Occupational 11 (Q) Multidisciplinary EI team Mixed methods Non-standardized:
et al. (2014) a rare developmental therapists. 2 (I) (public service). (questionnaire and • Survey with open- and
disability. • A speech and language interviews)—Quasi- closed-ended
therapist. experimental, cross- questions.
sectional design • Part A: consisted of
questions on rare
developmental
disabilities including
description of
intervention provided.
• Part B: participants
described caseload
management, format
of therapy sessions
and locality of service.
7. Davis and Australia Children 3 to 5 years • Families of children 3 64 14 early childhood Quantitative— Standardized:
Gavidia- with a developmental to 5 years with a intervention Correlational and • Family quality of life:
Payne (2009) delay or disability. developmental delay programmes (public descriptive design Beach Center FQOL
or disability. service). Scale (Beach Center
on Disability, 2003).
• Professional support:
The Measure of
Processes of Care 56
(MPOC-56; King
et al., 1995).
• Child behavioural
problems: 24-item
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
‘Child Behaviour/
Needs’ subscale of
the Parenting Hassles
MCCARTHY AND GUERIN

Scale (Gavidia-Payne
et al., 2003).
Non-standardized:
• Demographic
questionnaire.
• Information on service
inputs.
• Social support:
perceived satisfaction
with support from
family members
outside their
immediate family and
also their friends.
8. Dempsey Australia Children aged 4–7 years • Parents of children 33 • EI programme at the Quantitative—Mixed Standardized:
et al. (2009) with an intellectual or with an intellectual or Special Education methods • Enabling Practices
developmental developmental Centre, University of (questionnaires and Scale
disability. disability aged 4– Newcastle. face-to-face (Dempsey, 1995).
7 years. • State government questionnaires)— • Locus of Control Scale
agency for children Correlational and (Lumpkin, 1985).
who have a confirmed descriptive design • The Everyday
diagnosis of Parenting Scale (Dunst
intellectual or & Masiello, 2002).
developmental delay • The Scales of
or disability (university Independent
and public services) Behaviour Revised-
Early Development
Form (Bruininks
et al., 1984).
• The Developmental
Behaviour Checklist-
Short Form (Taffe
et al., 2007).
• Parenting Stress
Index-Short Form
(Abidin, 1995).
Non-standardized:
• Demographic
questionnaire.

(Continues)
9
 (Continued)
10

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
• Parents satisfaction
with support received
from the programme.
9. Dyke Australia Children with cerebral • Families receiving 64 (EIT families) The Community Quantitative—Quasi- Standardized:
et al. (2006) palsy (EIT and SAT services from the 94 (SAT families) Development experimental • MPOC-56 (King
populations) (EI data Cerebral Palsy 43 (clinicians) Programme at the et al., 1995).
presented separately). Association of Cerebral Palsy • The Measure of
Western Australia (EIT Association of Processes of Care for
and SAT). Western Australia (EIT Service Providers
• Clinicians in the and SAT disability (MPOC-SP; Woodside
Community programmes) (charity et al., 2001).
Development and public funded
Programme (including services).
physiotherapists,
occupational
therapists, speech and
language therapists
and social workers).
10. Fordham Australia Children aged 0–6 years • Families receiving 130 Two large EI agencies in Quantitative— Standardized:
et al. (2012) with a disability. services for a child New South Wales, Descriptive and • MPOC-56 (King
under the age of providing FCC for correlational design et al., 1995).
6 years. over 10 years (public • The Family
service). Empowerment Scale
(FES; Koren et al.,
1992).
• The Parenting Daily
Hassles Scale (Crnic &
Greenberg, 1990).
• The Family Support
Scale (FSS; Dunst
et al., 1984).
Non-standardized:
• Demographic
questionnaire.
• Contextual
information that may
impact care, including
services attended,
parent empowerment,
parenting stress and
support.
Australia 50 (Q) Standardized:
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
11. Fyffe Children eligible to • Families eligible to 15 (FUI) EI Disability Services in Mixed methods • Family Needs Scale
et al. (1995) receive EIT services receive EIT services in rural Victoria Australia (questionnaire and (Dunst et al., 1988).
(developmental delay, rural Victoria, (public service). limited follow-up • Family Support Scale
MCCARTHY AND GUERIN

language delay, Australia. interviews)— (Dunst et al., 1988).

physical disability) Descriptive and Non-standardized:
(average age correlational design • Demographic
46 months). questionnaire.
• Information on service
inputs.
12. Gavidia- Australia Children with disabilities • Families participating 29 (FM) EI community-based Quantitative—Quasi- Standardized:
Payne aged 24 to 71 months, in an ECI community- 10 (P) programme in experimental and • An adaptation of Child
et al. (2015) with about half having based programme in Melbourne, Australia correlational design Outcomes Summary
received a diagnosis Melbourne, Australia. (public service). Form (ECO
of autism spectrum • EI key workers Center, 2006).
disorder in the mild (professionals who • The Family Outcomes
developmental support children and Survey (Bailey
disability range. families in the et al., 2006).
implementation of EI • The Accommodations
programmes). Questionnaire (Tainsh
& Gavidia-
Payne, 2006).
• MPOC-20 (King, King,
& Rosenbaum, 2004).
Non-standardized:
• Demographic
questionnaire.
• Information on service
inputs.
13. Hwang Taiwan Children aged less than • Children with or at risk 15 (RBEI) • 1 medical centre. Quantitative— Standardized:
et al. (2013) 36 months with or at for developmental 16 (THV) • 3 hospitals. Experimental design • Pediatric Evaluation of
risk of developmental delay less than • 2 institutes. (single-blinded RCT Disability Inventory-
delay. 36 months of age and • 2 agencies of the with a 3-month Chinese version (Chen
their families. government social baseline, a 6-month et al., 2009).
welfare system in intervention and a • Goal Attainment
Taiwan (public 6-month follow-up Scaling (Kiresuk &
services). period) Sherman, 1968).
• Canadian
Occupational
Performance Measure
(Law et al., 1990).
• Comprehensive
Development
Inventory for Infants
11

(Continues)
 (Continued)
12

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
and Toddlers
(Wang, 1998).
• The Carolina
Curriculum for Infants
and Toddlers with
Special Needs-
Chinese version
(Johnson-Martin
et al., 2004).
14. Ideishi USA Children aged 0–5 years • Parents/caregivers. 50 (FG) • 2 EI community-based Mixed methods— Non-standardized:
et al. (2010) with a disability • Paediatricians and 16 (FM Q) services. (questionnaires and • Demographic
attending EI services therapists working 34 (P Q) • 2 medical-based focus groups)— questionnaire.
and/or children with hospital-based services (public Community • Family questionnaire
special healthcare programmes. services). participatory action including information
needs. • Therapists, service research—Descriptive on child's level of
coordinators and and exploratory disability.
other providers design • Provider-specific
working in questionnaire
community-based EI including information
programmes. on percentage of
children in practice by
disability.
15. Ingo lfsdo
 ttir Iceland Children aged 3–7 years • Children aged 3–7 9 (children) Three different Qualitative multi-case Non-standardized:
et al. (2017) with intellectual with intellectual 8 (families) municipalities: study design (in-depth An interview protocol
disabilities. disabilities and their 12 (FM) • Case Study A: interviews, participant was developed for
families. 11 (P) Reykjavík, the capital observations and both parents and
• Service team for each 9 (O) of Iceland. document analysis)— professionals. Key
child. • Case Study B: A rural Descriptive and themes included
municipality that is exploratory design • Participants'
composed of several experiences,
small communities— perspectives and
8000 inhabitants. understanding of the
• Case Study C: A welfare services
municipality in North offered to the children
Iceland widely in the study.
regarded as a model in • Co-operation and
integrated welfare consistency within the
services—18 000 service system.
inhabitants (public • Participants' views on
services). what worked well and
what did not work so
well.
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
16. Innocenti USA Children ≤3 years with • Children ≤3 years with 236 Early Head Start Quantitative— Standardized:
et al. (2013) an identified disability. an identified disability Research and Descriptive and • The Parenting
and their parents. Evaluation Project correlational design Interactions with
MCCARTHY AND GUERIN

(public funded Children: Checklist of

17. Jansen Netherlands Children aged • Parents of children
et al. (2013) 2 ≤ 17 years old with
profound intellectual
and multiple
disabilities with a
developmental age of
up to 24 months and
motor disabilities that
prevent independent
mobility who are
receiving care from
professional service
providers.
18. Kargin (2004) Turkey Children with severe and • Children with hearing
profound hearing loss,
aged 0–4 years, with
no additional
diagnosed impairment.
19. Leiter (2004) USA Children aged 0–3 years • Children aged 0–
with developmental
disabilities or delays
with a wide range of
impacts on their
research project).
100 (14, 0–5 years) • Day-care centre for Quantitative—Quasi-
with profound children.
intellectual and • Residential facility.
multiple disabilities. • School.
• Combination of
residential facility and
school.
• Combination of
residential facility and
day-care centre for
children.
• Other (funding not
specified).
12 Family-focused EI Quantitative—
loss between 0 and programme in the
4 years of age, with education of children
no additional with hearing
diagnosed impairment, impairments in rural
and their parents. areas of Ankara,
Turkey (university
designed service).
31 (FM) Three multidisciplinary Qualitative—Fieldwork
3 years with 19 (P) EI programmes in
developmental Massachusetts (public
disabilities or delays service).
and their families.
Observations Linked
to Outcomes.
Standardized:
experimental design • MPOC-NL-PMID:
author adapted
version of the Dutch
MPOC (van Schie
et al., 2004) for the
profound intellectual
and multiple
disabilities population.
Standardized:
Experimental • Parental Needs
(matched subjects Determination Scale
design) (Akçamete &
Kargın, 1996).
Non-standardized:
• Demographic
questionnaire.
• Author developed
Observation Form for
Evaluation of Verbal
Communication Skills
including (i) skills of
basic communication
and preparation to
learn, (ii) skills of
receptive language
and (iii) skills of
expressive language.
Not reported.
(interviews and
observations)—
Descriptive design
13

(Continues)
 (Continued)
14

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
health and • Professionals who
functioning. work with this
population (nursing,
social work, physical
therapy, occupational
therapy, speech/
language therapy,
early childhood
education and
psychology).
20. Mahoney USA Children aged 0–6 years • EI service providers for 989 EI disability services Quantitative—Quasi- Non-standardized:
and with disabilities. children aged 0– from six randomly experimental • Author designed five-
O'Sullivan 6 years with selected states from exploratory design part questionnaire
(1990) disabilities (teachers, each of the developed from focus
speech and language geographical regions groups with service
therapists, of the United States providers.
occupational (public service). • A: Demographic
therapists, physical information about the
therapists, social number and
workers/parent characteristics of
trainers, nurses and children. Service
psychologists). provider was asked to
select the three most
important goals of
services.
• B: Amount of time
spent per week with
children, families and
administrative
activities.
• C: Major services
provided and the
objectives of these
services.
• D: Number of families
with whom providers
were successful at
achieving five
common family
objectives.
• E: Providers rated 20
problems that arise
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
when working with
families.
21. Mahoney USA Children aged 0–6 years • EI service providers to 282 Three agencies within Quantitative—Quasi- Non-standardized:
MCCARTHY AND GUERIN

et al. (1989) with disabilities/ children aged 0– Connecticut known to experimental • Author designed five-
suspected disabilities. 6 years (teachers, provide services to exploratory design part questionnaire
speech and language children aged 0– developed from focus
therapists, 6 years with groups with service
occupational disabilities/suspected providers.
therapists, physical disabilities. Agencies • A: Demographic
therapists, social included the state information about the
workers/parent departments of number and
trainers, nurses and education and mental characteristics of
psychologists). retardation as well as children. Service
private organizations provider was asked to
(public and private select the three most
services). important goals of
services.
• B: Amount of time
spent per week with
children, families and
administrative
activities.
• C: Major services
provided and the
objectives of these
services.
• D: Number of families
with whom providers
were successful at
achieving five
common family
objectives.
• E: Providers rated 19
problems that arise
when working with
families.
22. Marshall USA Children aged 0–4 years • Parents of children 13 (FM) • Part C EI programme Qualitative (focus Non-standardized:
et al. (2015) with Down syndrome. ages 0–4 with Down 37 (P) (Early Steps) for groups and • Parents and providers
syndrome. children aged 0–3. interviews)— were asked about
• Providers who serve • Children's Medical Descriptive and specific services and
this population Services, a Florida exploratory design supports for families
(medical care state-wide network of with infants with
managers, EI service physicians and Down syndrome.
15

(Continues)
 (Continued)
16

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
co-ordinators, healthcare providers
paediatric physical, funded through
occupational and federal legislation.
speech and language • Community and/or
therapists). private services
(public and private
services).
23. McKean Australia Children aged 3–6 years • Children aged 3– 10 (FCP) Speech Pathology Mixed methods Standardized:
et al. (2012) with an identified 6 years with an 10 (UP) Services, Ballarat (quantitative and • MPOC-56 (King
speech sound and/or identified speech Health Services, a qualitative methods)— et al., 1995).
language disorder; sound and/or regional health service Experimental design— • GAS (Kiresuk
normal hearing and language disorder; in Victoria, Australia (RCT) et al., 1994).
vision (with or without normal hearing and (public service). • The Articulation
correction). vision (with or without and/or Phonology
correction) and whose Assessments of the
parents were available DEAP (Dodd
for each session. et al., 2002).
• The Information and
Grammar scores of
the RAPT
(Renfrew, 1997).
Non-standardized:
• Author developed
satisfaction survey
delivered to parent/
carer.
24. Pickering and UK Children aged between • Staff working with 29 (P) Three children's centres Qualitative (focus Standardized:
Busse (2010) 11 months and children ≤6 years with 10 (FM) providing EI disability groups and • MPOC-SP (Woodside
6 years with an an identified disability services in Wales interviews)— et al., 2001) as
identified disability. (information officers, (public service). Descriptive and stimulus for discussion
Disabilities included key workers, nurses, exploratory design at the start of the
cerebral palsy, Cri du occupational focus groups with
chat, mucolipidosis therapists, staff.
type II, Weaver's physiotherapists,
syndrome, Down portage workers,
syndrome and spina psychologists, social
bifida. workers and speech
and language
therapists).
• Parents of children
≤6 years with an
identified disability.
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
25. Raghavendra Australia Children with physical • Family members of 169 (FM) Novita provides therapy, Quantitative—Quasi- Standardized:
et al. (2007) disabilities aged <6, children with physical 122 (P) equipment and family experimental design • MPOC-20 (King, King,
6–12 and 13– disabilities aged <6, support services to & Rosenbaum, 2004).
MCCARTHY AND GUERIN

18 years. 6–12 and 13– children with physical • MPOC-SP (Woodside

18 years.
• Staff of Novita who
have direct contact
with these clients and
their families.
26. Robinshaw UK Deaf children ≤5 years • Clinicians who work 77
and with preschool deaf
Evans (2001) children and their
families (teachers of
the deaf and speech
and language
therapists working
with preschool deaf
children).
• Heads of services from
each of the selected
models of preschool
provision.
• Parents/caregivers
receiving services.
and severe multiple et al., 2001).
disabilities. Services Non-standardized:
are delivered in • Staff provided
homes, kindergartens information on their
and schools, or in role, length of service
community settings by and experience of
regional FCC.
multidisciplinary • Both staff and parents
teams (charity and could make written
public funded comments.
services).
Service providers from Mixed methods Non-standardized:
health (speech and (questionnaires and • Two questionnaires
language therapy) and interviews)— designed by ‘expert
education (special Descriptive and scientific panel’.
educational needs) exploratory design Questions presented
across England and in both questionnaires
Wales (public as follows:
services). A. Referral and early
intervention.
B. Family focus and
parent/professional
partnerships.
C. Co-ordinated,
multidisciplinary
service provision.
D. Monitoring and
assessment of
provision.
E. Assessment and
statementing of the
child.
F. Funding/management
issues.
Additional categories
were employed for
teachers of the deaf
and speech and
language therapists.
17

(Continues)
 (Continued)
18

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
27. Simeonsson USA Young children with • Professionals in 16 23 (F) This study was part of a Quantitative—Quasi- Standardized:
et al. (1991) developmental delays home-based infant larger research effort experimental • GAS (Kiresuk &
attending EI; 95% had intervention evaluating the Lund, 1976).
a disability diagnosis, programmes in North implementation of a • The Family Needs
and 5% were at risk or Carolina. family-focused Survey (Bailey &
developmentally • Families of children intervention model in Simeonsson, 1988).
delayed. using these services. a state-wide early • The Impact on Family
intervention system. Scale (Stein &
Community-based Riessman, 1980).
services were
provided to the
families (public
service).
28. Stefánsdo  ttir Iceland Children/young people • Parents of children 236 (108, 0–6 years) Iceland's largest Mixed methods Standardized:
and Tho ra aged 0–18 with and young people (FM Q) rehabilitation centre, (interviews and • MPOC-32, author
Egilson (2016) various forms of aged 0–18 with 5 (0–5 years) (FM I) provides clinic-based questionnaires)— devised version of the
disabilities. Two thirds various forms of 25 (P Q) occupational therapy Explanatory Icelandic MPOC-20
of population had disabilities. and physiotherapy sequential design (Arnadottir &
more than one • Care providers of services to children Egilson, 2012) with
disability/impairment, children and young and youth with additional items from
and a wide range of people aged 0–18 various types of the MPOC-56 (King
developmental with various forms of disabilities (public et al., 1995) added to
disabilities were disabilities. service). the questionnaire.
represented. • MPOC-SP (Icelandic):
(Vidarsdottir
et al., 2010).
• GAS (Kiresuk &
Sherman, 1968).
29. Washington Canada Preschool children aged • Preschool children 52 (SLT I) Paediatric speech and Quantitative—Quasi- Standardized:
et al. (2012) 36 to 60 months with communication 15 (WLC) language services in experimental • Communication
(mean = 52 months) disorders. Ontario, Canada Function Classification
with a communication • Parents of (public service). System (Hidecker
disorder or a preschoolers with et al., 2011).
communication communication • Vineland Adaptive
disorder and a disorders. Behaviour Scales-II
developmental (Sparrow et al., 2005).
mobility impairment. • The Focus on the
Outcomes of
Communication Under
Six (Thomas-Stonell
et al., 2010).
Non-standardized:
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
• Parent ratings of the
child–professional
relationship
MCCARTHY AND GUERIN

established during
speech and language
intervention.
30. Wilkins Australia Children aged 0–6 years • Parents of children 165 Disability Services Quantitative—Quasi- Standardized:
et al. (2010) with a diagnosis or aged 0–6 years with a Commission in experimental • MPOC-56 (King
potential intellectual diagnosis or potential Western Australia— et al., 1995).
disability. intellectual disability The disability sector in Non-standardized:
registered with the Western Australia • Demographic
Disability Services includes a complex questionnaire.
Commission, Western array of both • Information on service
Australia. government and non- provision.
government services • Perceptions and
(charity and public comments of MPOC
funded services). and questionnaire.
31. Bosak USA Children aged 0–5 years • Primary caregivers of 18 Early childhood Mixed methods— Standardized:
et al. (2019) receiving children attending educational Secondary analysis of • Young Children's
rehabilitation services either an early programme and early data (questionnaires Participation and
for a developmental childhood educational intervention and coding of Environment Measure
delay. programme or an early programme (private documentation)— (Khetani et al., 2015).
intervention and charity funded Descriptive design Non-standardized:
programme. services). • Demographic
questionnaire.
• Care plans devised via
the Participation and
Environment Measure
Plus (PEM+)
electronic health tool
(Khetani et al., 2017).
32. Dias and Portugal Children aged 3–5 years • EI service providers. 60 (P) EI services, provided Quantitative—Quasi- Standardized:
Cadime (2019) old with diverse • Family caregivers of 78 (FM) within preschool, experimental design • Family Focused
disabilities (mild to children aged 3– home and other Intervention Scale—
severe), including 5 years with diverse settings/organizations Portuguese version
hearing impairment, disabilities. (public, private and (Pimentel, 2003).
visual impairment, charity funded Non-standardized:
autism, global services). • Demographic
developmental delay questionnaire (family
and other non- and professional
specified difficulties. versions).

(Continues)
19
 (Continued)
TABLE 4
Study Country Disability population Sample N Service context/setting
33. Douglas USA Infants/toddlers with • EI providers currently 19
et al. (2020) developmental working with infants/
disabilities or delays in toddlers with
cognition and developmental
communication. disabilities or delays in
cognition and
communication or EI
providers engaged in
caregiver coaching in
a natural setting (i.e.,
home or child care
setting).
34. Ely and N/A Infants and toddlers • Participants included 622 total participants
Ostrosky aged 0–3 years with infants, mother/infant
(2018) visual impairments. dyads, mothers,
infant/parent/
professional triads,
college students, EI
professionals,
respondents, EI visual
impairment
professionals, infants
with vision loss,
sighted infants, child/
caregiver dyads,
families and
caregivers.
35. García-Grau Spain Children aged 0–6 years, • EI professionals from 250
et al. (2020) at risk of or with 44 centres in 20 cities
developmental in Spain. The centres
disorders. were distributed all
around Spain,
including participants
from 11 of the 17
autonomous
communities (i.e.,
states). Professionals
included
psychologists, speech
and language
therapists and
physical therapists.
Other providers
20
Measures/data
Study design collected
EI services provided to Mixed methods— Non-standardized:
infants/toddlers with Convergent design • EI providers
disabilities (public). (questionnaires, experiences, practices,
interviews, coaching needs and preparation
logs)—Descriptive of caregiver coaching
gathered via an online
questionnaire, phone
interview and
coaching logs.
EI services provided to Mixed methods— Non-standardized:
across 27 studies, 21 infants/toddlers aged Systematic literature • Adult learning.
of which were 0–3 years with visual review—Descriptive • Child learning.
empirical studies. impairments (funding • Family-centred and
not specified). relationship-based
practices.
• Natural environments.
• Quality team practices.
EI services for children Quantitative—Quasi- Standardized:
aged 0–6 years at risk experimental • The Spanish version of
of or with the Families in Natural
developmental Environments Scale of
disorders and their Service Evaluation II
families. Intervention (McWilliam, 2011).
provided was holistic Non-standardized:
and planned by an • Demographic
interdisciplinary or questionnaire.
transdisciplinary team
of professionals
(public, private and
publically funded).
MCCARTHY AND GUERIN
TABLE 4 (Continued)

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
included special
education teachers,
occupational
MCCARTHY AND GUERIN

therapists, social
workers and other
disciplines.
36. García-Grau Spain Children aged 0–6 years • Professionals included 250 (F) EI services for children Quantitative—Quasi- Standardized:
et al. (2019) with a disability, delay physical therapists, 250 (P) aged 0–6 years during experimental • Spanish version of the
or at risk of a speech and language a family-centred Family Quality of Life
disability. Disabilities therapists, implementation Scale (McWilliam &
included intellectual psychologists and process; 44 EI centres Casey, 2013) (F).
disabilities, motor social workers. located in 15 of the Non-standardized:
delays/disorders, 17 autonomous • Demographic
prematurity/at risk, communities (i.e., questionnaire (F).
developmental delay, states) in Spain Form on professional
language delay, autism (public, private and and service
spectrum disorder and publically funded). information (P)
other disabilities.
37. Gràcia Spain Children aged 0–4 years • Families of children 11 (F) EI disability service from Mixed methods design— Standardized:
et al. (2020) with intellectual with intellectual 11 (P) 6 centres in Spain (i) Pre-training, • The Spanish version of
disabilities. disability. (public, private and training and follow-up the Families in Natural
• EI professionals. publically funded). procedures used to Environments Scale of
support the Service Evaluation II
professionals pre (McWilliam, 2011)—
training; (ii) training; pre and post training.
and (iii) follow-up— • Evaluating the
Quasi-experimental Implementation of
exploratory case study Family-Centred
design. Practice (Ahn
et al., 2011).
• Parent Satisfaction
with the Home Visitor
and Home Visit: A
survey for parents
(Roggman
et al., 2008)—pre and
post training.
Non-standardized:
• A focus group on
professionals'
perceptions regarding
the transition from a
centre-based to
21

(Continues)
 (Continued)
22

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
family-cantered EI
programme.
38. Nickbakht Australia Children aged 6– • Family members of 17 (FM) A Hearing Transition Qualitative—Descriptive Non-standardized:
et al. (2019) 30 months with children with hearing 11 (P) Service supporting design Needs of families of
permanent hearing loss with or without families of children children with hearing
loss, with and without additional disabilities. with hearing loss from loss during the
additional disabilities. • Professionals who diagnosis to transition period from
support the families enrolment in EI diagnosis to
during the transition disability services enrolment in EI.
period from diagnosis (public). Topics included
to enrolment in EI support and services,
(social workers, decision making and
psychologists, a public the transition to EI.
health professional
and a child
development nurse).
39. Phoenix Canada Children aged 0–6 years • Parents of children 20 Community-based Qualitative—(secondary Non-standardized:
et al. (2020) who had a aged 0–6 years children's treatment data analysis)— • Parents' expectations,
developmental availing of one or centre in Ontario, Descriptive design attendance,
disability or delay and more therapy services Canada (public and participation and
used therapy services from a community- charity). engagement in
at a children's based children's services.
treatment centre in treatment centre in
Ontario, Canada. Ontario, Canada.
Disabilities included
no formal diagnosis,
medical diagnosis,
autism spectrum
disorder, cerebral
palsy, apraxia, Down
syndrome and other
diagnoses.
40. Ridgley USA Infants/toddlers with • Service coordinators 73 (P) Four EI service districts Quantitative— Standardized:
et al. (2020) developmental delays were recruited from 623 IFSP documents in Tennessee (public). Descriptive and • The Individualized
or disabilities. four early intervention exploratory design Family Service Plan
service districts. Rating Scale
• De-identified IFSPs (McWilliam &
from individual Jung, 2001).
children/families were • The Goal Functionality
collected from each Scale III-TP
participating service (McWilliam, 2009).
coordinator. Non-standardized:
MCCARTHY AND GUERIN
 (Continued)
MCCARTHY AND GUERIN

TABLE 4

Measures/data
Study Country Disability population Sample N Service context/setting Study design collected
• The Tennessee Early
Learning
Developmental
Standards alignment
review—author
designed tool.
41. Tew and Malaysia Children and young • Parents of children 200 (FM) Outpatient paediatric Quantitative—Quasi- Standardized:
Ahmad people aged 0– and young people 101 (1–6 years old) rehabilitation service experimental cross- • Malay MPOC-20
Fauzi (2020) 18 years with aged 0–18 years with (public). sectional design (Fauzi et al., 2015).
neurodevelopmental neurodevelopmental
disabilities. disabilities (some data
for children aged 0–
6 years reported
separately).
42. Ueda and Japan Children aged 0–6 years • Mothers of children 394 EI services based in 12 Quantitative— Standardized:
Yonemoto with disabilities. aged 0–6 years development support Correlational and • Japanese version of
(2020) currently receiving EI centres for children descriptive design, the Family Outcomes
services. with disabilities in the cross-sectional design Survey (Ueda
following prefectures et al., 2015) with
of Japan: Akita, family outcomes as an
Hyogo, Tottori, outcome measure and
Hiroshima, Okayama, helpfulness indicators
Yamaguchi, Saga and as a family variable.
Fukuoka (public). Non-standardized:
• Demographic
questionnaire.

Abbreviations: ECO, Early Childhood Outcomes; EI, early intervention; EIT, early intervention team; F, families; FCC, family-centred care; FG, focus groups; FM, family members; FUI, follow-up interviews; I,
interviews; IFSPs, Individualized Family Service Plans; N/A, not applicable; O, observations; P, professionals; Q, questionnaires; RBEI, routine-based early intervention; RCT, randomized controlled trial; SAT,
school age team; SLT I, speech and language therapy intervention; THV, traditional home visiting; WLC, wait list control.
23
24
combination of public, private or charity/non-profit services (n = 12,
28.6%), amongst others (see Table 4). Services were predominately
multidisciplinary (n = 39, 92.9%), with two studies included which
examined unidisciplinary speech and language therapy services (4.8%)
and one which examined a university-designed family-focused educa-
tion programme (2.4%). As expected, most studies centred exclusively
on children aged 0–6 years eligible to attend EI disability settings
(n = 34, 81%). Two additional studies (4.7%) were included that
extended this age range to 7 as they met all other inclusion criteria,
accounted for minor variation in early services internationally and the
aging out of children during recruitment. Studies were included that
presented data for children in the EI age range separately in addition
to other data (e.g., integrative services for children aged 0–18 [n = 6,
14.3%]; see Table 4).
The nature of children's disabilities was often not specified, with
populations including children with disabilities/developmental delays
generally (n = 23, 54.8%). In nine papers (21.4%), the population con-
sisted of various disabilities, comprising co-morbid presentations
including special healthcare needs. A minority of papers focused on
specific disability populations (e.g., physical disabilities) (n = 10,
23.8%), with and without additional needs. Study participants
included professionals and families (n = 14, 33.3%); families/parents
(n = 13, 31%); children and their families (n = 4, 9.5%); professionals
(n = 7, 16.7%); and children, their families and/or professionals (n = 3,
7.1%). One study (2.4%) included children with disabilities as their sole
participants.
A quantitative approach was the most common methodology
(n = 23, 54.8%), followed by mixed methods (n = 12, 28.6%) and
qualitative methods (n = 7, 16.7%). Study designs were predominantly
correlational and/or descriptive/exploratory in nature (n = 22, 52.4%),
followed by quasi-experimental (n = 17, 40.5%) and experimental
(n = 3, 7.1%) designs, respectively. The majority of studies described
and outlined FCC principles to a reasonable degree. However, eight
papers (19%), although explicitly family focused, did not explicate FCC
principles in detail. Instead, this information was inferred and
extracted from reported findings. Information on service inputs was
varied with the majority of the papers simply stating the service con-
text rather than detailing services delivered (see Table 4).
3.1.1 | Data collection instruments
Studies utilized standardized (n = 8, 19.1%), non-standardized
(n = 14, 33.3%) and a combination of data collection instruments
(n = 19, 45.2%), with one study outlining no method of data collection
(2.4%). Various forms of the Measure of Processes of Care (MPOC)
instrument (King et al., 1995) were employed across 13 (31%) studies,
making it the most common outcome measure employed. This was
followed by the Family Supports Scale (Dunst et al., 1988) and the
Spanish version of the Families in Natural Environments Scale of Ser-
vice Evaluation II (McWilliam, 2011), which were employed in two
(4.8%) papers, respectively. Goal Attainment Scaling was employed in
four (9.5%) papers to document and measure goal progress and
MCCARTHY AND GUERIN
achievement. Data collection instruments fell into four broad catego-
ries measuring the processes of FCC, family/parent outcome mea-
sures, child outcome measures and additional care measures (see
Table 4 for a detailed overview).
3.2 | The processes and outcomes of FCC
In an effort to collate and synthesize extracted data, thematic anal-
ysis was conducted on key extracted data items (i.e., findings on
FCC processes/inputs and FCC outcomes/outputs, and factors
impacting these variables). Final themes and subthemes generated
from this process are summarized visually in Figure 2 and outlined
in Table 5.
3.2.1 | Processes of FCC
Thirty eight (90.5%) papers outlined the processes of FCC (see
Table 5). Extracted data primarily took the form of qualitative informa-
tion and/or the endorsement of MPOC subscales as family-centred
processes. Of note, parallels could be drawn between extracted data
and the MPOC subscales (e.g., the theme of communicating informa-
tion and coaching subsumed the MPOC subscales of communicating
specific information and providing general information). Therefore, these
data were collated and presented in Figure 2 and Table 5.
The theme of communicating information and coaching and the
identified subthemes of imparting specific information and family edu-
cation and skills development represented the more practical compo-
nents of the operationalization of FCC outlined in the literature.
Imparting specific information originated from explicit information
needs reported such as financial advice (Pickering & Busse, 2010),
medical information (Ideishi et al., 2010), information on services in
the charity/private sector and information following diagnosis
(Robinshaw & Evans, 2001), amongst others. Family education and
skills development also represents a more complex presentation of
general and specific information provision in FCC through docu-
menting not just parent teaching practices such as modelling
(Dall'Alba et al., 2014), direct teaching (Leiter, 2004) and family
coaching (Hwang et al., 2013), but professionals' and parents' unique
roles in the transfer of information and skills. Through imparting spe-
cific information, family members are conceptualized as passive recipi-
ents of professionals' expertise and knowledge through the process of
information provision. However, the subtheme of family education and
skills development represents a more interactive and relational process
between the professional, family and child via parent education and
coaching. Moving beyond the unidirectional transfer of information,
professionals are portrayed as ‘conduits’ of clinical information
(Carter & Thomas, 2011) whereby families are conceptualized as
active agents in their child's care with the capacity to carry over learnt
skills at home (Leiter, 2004), foster positive parent–child relationships
(Ely & Ostrosky, 2018) and become ‘advocates’ for their children
(Mahoney & O'Sullivan, 1990).
MCCARTHY AND GUERIN
F I G U R E 2 Visual overview of systematic review results
Note: *Themes that subsume relevant Measure of Processes of Care subscales/processes
The theme of service operations and related subthemes revealed
the significance of practical and everyday operational tasks in the
delivery of EI services. The subtheme service coordination, organization
and structure emphasized the importance of activities such as
responding to initial concerns (Robinshaw & Evans, 2001), accessible
supports and resources (Chong et al., 2012) and coordinated care
(Nickbakht et al., 2019). Care planning and goal setting revealed the
importance of formal administrative processes such as Individualized
Family Service Plans (IFSPs) (Bosak et al., 2019) and clear guidelines/
protocols (Carter & Thomas, 2011) in the provision of FCC, especially
in newer publications. Similarly, Routines-Based Interviewing was
employed as a means of setting functional and meaningful child and
family goals (Ridgley et al., 2020). The subthemes of professionals
around the child and family and clinic- and home-based work empha-
sized the importance of multidisciplinary work (Dyke et al., 2006) and
keyworking (Pickering & Busse, 2010) in the operationalization of
 ttir & Tho
FCC, in addition to working across clinic (Stefánsdo  ra
Egilson, 2016) and home (Ideishi et al., 2010) contexts.
Consistent with the conceptualization of FCC outlined by Dunst
and Trivette (1996) and Dunst et al. (2006, 2007), the themes of par-
ticipatory caregiving and relational caregiving were extracted as key
facets of FCC. In line with the conceptual literature, participatory care-
giving involved ‘engaging with families’ (Dall'Alba et al., 2014), ‘collab-
orative consultation’ through the formation of an ‘equal and
partnering relationship’ (García-Grau et al., 2019) and the involvement
of the family in key processes such as decision making (Dall'Alba
25
et al., 2014). Relational caregiving was defined by ‘good’ clinical skills
such as being flexible, demonstrating ‘interpersonal sensitivity’ and
‘respect’ (Pickering & Busse, 2010) and adopting a ‘reciprocal and col-
legial approach’ (Carter & Thomas, 2011).
A number of less represented but significant themes were also
identified. This included the topic of child-focused activities, which
acknowledged the role of targeted ‘child-centred’ care practices
(Ideishi et al., 2010) delivered in conjunction with FCC, such as
 ttir &
‘habilitation’ (Leiter, 2004) and ‘physical disability’ (Stefánsdo
ra Egilson, 2016). The theme of professional competency and
Tho
development was identified to represent the attainment of necessary
skills to work in an EI setting, such as mandated FCC training in
transitioning services (Gràcia et al., 2020), experience working with
both families and teams (Brotherson et al., 1993) and the capacity
for professionals to become increasingly competent (Dyke
et al., 2006) and even ‘entrepreneurial’ (Carter & Thomas, 2011) in
their practices with experience and time. Support network and com-
munity integration represented the role of FCC services in making
families aware of their existing resources via tools such as an
ecomaps (García-Grau et al., 2019) and facilitating and fostering
families' relationships with other families and accessing community
supports (Mahoney & O'Sullivan, 1990). Lastly, the provision of psy-
chological support emerged as a separate theme, whereby emotional
support (Leiter, 2004) and formal parent counselling (Mahoney
et al., 1989) are delivered as part of FCC, recognizing the emotional
impact of having a child with a disability.
26 MCCARTHY AND GUERIN

TABLE 5 Overview of topics, themes and subthemes, including frequency of occurrence

Topic Theme Subthemes Frequency and paper ID

Processes of FCC Service operations a
• Service coordination, n = 21 (2, 3, 4, 5, 6, 9, 14, 19, 20, 21, 22, 24, 26,
organization and 28, 31, 34, 35, 36, 37, 38, 40)
structure
• Care planning and goal
setting
• Professionals around the
child and family
• Clinic- and home-based
work
Participatory caregivingb n = 17 (3, 4, 5, 6, 11, 13, 19, 21, 23, 24, 26, 27, 28, 29, 33, 35, 36)
Communicating • Imparting specific n = 17 (4, 5, 6, 13, 14, 15, 19, 20, 21, 22, 24, 26, 28, 32, 33, 34, 38)
information and informationc
coachingc, d • Family education and
skills developmentd
Relational caregivinge n = 9 (3, 4, 15, 24, 26, 28, 33, 35, 38)
Child-focused activities n = 6 (6, 14, 19, 28, 32, 40)
Professional competency and development n = 6 (2, 4, 9, 24, 34, 37)
Psychological support n = 5 (4, 19, 20, 21, 38)
Support network and community integration n = 6 (14, 20, 21, 36, 37, 38)
Outcomes of FCC Child development n = 10 (7, 12, 13, 18, 23, 27, 29, 33, 34, 42)
Parent/family development n = 11 (4, 8, 10, 12, 13, 23, 26, 33, 34, 37, 42)
Attainment of family • Support needs n = 6 (10, 20, 21, 27, 31, 40)
goals • Care plan
documentation
Quality of life n = 4 (7, 24, 26, 36)
Parent satisfaction n = 5 (4, 23, 32, 37, 39)
Community engagement n = 3 (10, 26, 42)
Parent–professional collaboration n = 3 (4, 37, 39)
Professional development n = 4 (2, 33, 35, 37)
Factors and Service operations and resources n = 17 (2, 3, 4, 6, 10, 11, 14, 20, 21, 23, 24, 26, 30, 33, 34, 36, 37)
experiences that Service location and logistics n = 11 (2, 6, 10, 11, 22, 23, 26, 30, 35, 40, 42)
impact FCC
Child and family characteristics n = 13 (1, 6, 11, 12, 15, 23, 25, 30, 32, 33, 36, 38, 42)
Family resources n = 10 (11, 14, 18, 20, 21, 22, 24, 34, 36, 42)
Professional characteristics n = 8 (4, 10, 12, 14, 24, 28, 32, 37)
Parent attitudes, engagement and agency n = 9 (6, 8, 15, 19, 20, 31, 33, 39, 42)

Note: Superscripts a–e are Measure of Processes of Care subscales/processes and corresponding qualitative themes.
Abbreviation: FCC, family-centred care.
a
Coordinated and comprehensive care.
b
Enabling and partnership.
c
Communicating specific information.
d
Providing general information.
e
Respectful and supportive care.

Measuring FCC devised) and corresponding parent interviews, discrepancies were

In examining the measurement of FCC, the majority of studies that
employed the MPOC positively endorsed all subscales, with mean
scores of four or more indicating that these processes had occurred at
 ttir and Tho
least to a moderate extent. Despite this, Stefánsdo  ra
Egilson (2016) report a more ‘complicated’ picture of FCC delivery
and service satisfaction. Utilizing both the ‘MPOC-32’ (author
observed. For example, parents' mean scores for coordinated and com-
prehensive care were relatively high; however, interviews revealed that
professionals led collaborative activities with parents, prompting the
authors to query if parents were ‘collaborating or just following
instructions?’. Only one study utilizing the MPOC examined King
et al.'s (1995) criteria for determining clinical improvement, with the
MCCARTHY AND GUERIN
endorsement of processes reflected in MPOC subscale scores not
necessarily translating into the implementation of FCC in actuality
(Dyke et al., 2006). Interestingly, 10 studies reported subscale means
only, and/or comparisons between means and other variables, indicat-
ing a lack of focus on the efficacy of specific FCC operations.
3.2.2 | Outcomes of FCC
Only 25 (59.5%) papers reported outcomes of family-centred EI, indi-
cating a greater focus on FCC processes (see Figure 2 and Table 5).
One of the most commonly reported themes here was in relation to
child development including positive social, functional, motor and com-
munication outcomes. The theme of parent/family development was
also frequently represented, with improvements in parent well-being/
self-care, knowledge and empowerment listed. Attainment of family
goals represented the achievement of both family and professionally
devised family-centred goals. The subtheme of family support needs
included post-diagnostic support to increase ‘parent acceptance of
disability’ (Mahoney & O'Sullivan, 1990) and information needs such
as helping the family ‘understand child's disability’ (Mahoney &
O'Sullivan, 1990). The subtheme of care plan documentation
accounted for the role of the participation care plan (Bosak
et al., 2019) or IFSPs (Ridgley et al., 2020) as a concrete outcome, and
its role in supporting and measuring the achievement of identified
goals. The topic of quality of life had wider implications beyond the
child, representing the quality of family life with consequences for sib-
lings, the wider family system, planning for the future, respite care,
financial support, coping skills, social prospects and ethical concerns
as outlined by Pickering and Busse (2010). The theme of community
engagement also transcended child outcomes, accounting for family
engagement with informal support networks and feelings of empow-
erment within the service system. Additional themes evident in the lit-
erature included parent professional collaboration and professional
development as a consequence of FCC (see Figure 2 and Table 5).
3.2.3 | Factors and experiences that impact FCC
Information was extracted on factors reported to influence the effi-
cacy and associated outcomes of FCC (see Figure 2 and Table 5). Ser-
vice operations and resources was the most frequent theme,
accounting for factors such as the endorsement and ‘formation of
quality teams’ at the service level (Ely & Ostrosky, 2018), the ‘fre-
quency of professional contact with family’ (Wilkins et al., 2010),
‘administrative’ difficulties (Mahoney & O'Sullivan, 1990), service
coordination (Fordham et al., 2012) and time constraints (Douglas
et al., 2020), amongst other variables. This was related to the theme
of service location and logistics, which included the ‘distance between
child and therapy’ (Dall'Alba et al., 2014), the distance between team
members (Brotherson et al., 1993), and service delivery settings such
as home- versus clinic-based service delivery (Ridgley et al., 2020) and
EI provided in education settings (Ueda & Yonemoto, 2020). This
27
therefore accounted for the significance of context in the effective
delivery of FCC.
Child and family characteristics included factors such as the child's
diagnosis (Wilkins et al., 2010), level of impairment (Fyffe et al., 1995),
age (Arnadottir & Egilson, 2012) and behaviour (García-Grau
et al., 2019), in addition to family health (Dall'Alba et al., 2014) and
parental marital status (García-Grau et al., 2019) cited as impacting
FCC delivery. The theme of family resources accounted for families'
personal capabilities and supports in caring for their child with addi-
tional needs and promoting positive outcomes. This included factors
such as family levels of support (Mahoney et al., 1989), parent educa-
tion (Fyffe et al., 1995) and financial resources (Marshall et al., 2015).
In contrast, four papers reported observing no effects on FCC for
child and family demographic characteristics (Bruder & Dunst, 2008;
Fordham et al., 2012; Hwang et al., 2013; Tew & Ahmad Fauzi, 2020).
In addition, two papers also reported no effects for parents' educa-
tional and financial resources (Tew & Ahmad Fauzi, 2020; Wilkins
et al., 2010), amongst a number of reported discrepancies in the con-
founding variables impacting FCC. All factors reported to impact FCC
provision were considered in the current review.
Significantly, professional characteristics such as having the ‘right’
personality and attitude to work with children and families
(Pickering & Busse, 2010) and requiring the necessary communication
skills (Ideishi et al., 2010) were acknowledged as confounding vari-
ables in FCC delivery. FCC was also impacted by professionals' experi-
ence of and training needs in relation to FCC (Dias & Cadime, 2019)
and their adaption or resistance to new ways of working or in roles
such as ‘coach’ in the transition to FCC (Gràcia et al., 2020). The final
theme of parent attitudes, engagement and agency reflected factors
that hinder and/or facilitate parent engagement with FCC. This
included parents' comfort (Dempsey et al., 2009), compliance
(Leiter, 2004), expectations (Phoenix et al., 2020) and perceived help-
fulness (Ueda & Yonemoto, 2020) of therapies and services, in addi-
tion to their ability to express their autonomy (Dempsey et al., 2009)
and choice (Leiter, 2004) in relation to inputs.
4 | DI SCU SSION
This review sought to identify the processes and outcomes of FCC as
reported in the quantitative and qualitative empirical literature, and
the wider factors that impact the delivery of FCC. Processes were
classified as family-centred inputs, supports, experiences and
resources, whereas outcomes were termed the positive effects of ser-
vice received (Dunst, 2005).
4.1 | Processes and outcomes of FCC
In examining the operationalization of FCC and factors that influence
it, attempts were made to organize the differing roles of variables
identified across studies. The specific direction of variables however
could not be conclusively determined. It is noted that FCC was
28
primarily conceptualized in the literature as the application of care
with corresponding outcomes and confounding variables (see
Figure 2). This supports a need for further evidence on the interactive
and moderating role of variables involved in FCC and highlights diffi-
culties evaluating FCC as outlined by Shields (2015). Further analysis
is necessary to draw any conclusions on the role of key independent,
moderating and dependent variables in the provision of FCC such as
those presented by Dempsey and Keen (2008). Additionally, the con-
ceptualization of processes as outcomes and vice versa must be con-
sidered. For example, the IFSP functions as both a family-centred
process through the action of devising goals with families and a tangi-
ble output in the form of live document that records and measures
the achievement of identified goals. This also prompts further ques-
tions on the examination of philosophical models empirically, and how
FCC translates not only operationally but also in the designs and
methodologies of healthcare research. It is perhaps incongruent to
evaluate FCC within the cause and effect framework of intervention
research.
In conceptualizing the delivery of FCC to children with disabilities
and their families, key reviews have presented FCC as a unidirectional
application of care processes (Dempsey & Keen, 2008; Dunst
et al., 2006, 2007). However, the findings of the current review pre-
sent FCC as a more collaborative experience that arguably coincides
better with the theoretical principles outlined by Rosenbaum
et al. (1998) and Dunst (2002). The relational nature of FCC can be
illustrated by the theme of communicating information and coaching
and the corresponding outcome theme of parent/family development,
whereby the facilitation of family education and skills development
has direct implications for positive outcomes, such as the carry-over
of therapeutic skills, family engagement with services and the ability
for parents to advocate for their child/family. Significantly, these find-
ings concur with Schenker et al.'s (2016) proposal that FCC is a ‘trans-
actional process’. With further empirical evidence, FCC therefore may
be best represented as a reciprocal model whereby the outcomes of
FCC have rebounding and evolving effects over time. The influence
of confounding variables is also noted (see Figure 2). Significantly, the
themes of service operations and resources and service location and
logistics were extracted, in addition to themes such as child and family
characteristics and parental self-efficacy and agency already cited by
Dunst et al. (2007) and Dempsey and Keen (2008). The acknowledge-
ment of the role of structural and systemic factors in the effective
delivery of FCC consequently garners support for the conceptualiza-
tion of FCC as an ecological model. This thesis therefore supports
FCC as intrinsically interactive but extends this concept further to
account for the systemic and chronological effects of FCC, not fully
represented in the literature.
The reporting of MPOC subscales as family-centred processes
was widespread across the literature, with generally positive endorse-
ments of FCC reported. All studies positioned themselves within an
FCC ethos; however, varied descriptions of service inputs were pro-
vided. Many studies focused instead on the general support of family-
centred processes and/or the relationship between FCC processes
and parent/child characteristics. Although empirically valid, it is
MCCARTHY AND GUERIN
asserted that the reporting of MPOC subscales and arguably the over-
simplification of FCC to these processes lacked clinical utility. The
reporting of subscale means derived support for FCC globally how-
ever failed to account for specific operations, which did not meet King
et al.'s (1995) criteria for clinical improvement. It is therefore argued
that this extracted literature detailed sparse operational recommenda-
tions for executing and developing FCC in clinical practice.
4.2 | Methodological findings
Descriptive analysis revealed that only three (10%) of the selected
studies had a randomized controlled trial (RCT) experimental design.
This is consistent with Shields' (2015) and Shields, Zhou, Pratt,
et al.'s (2012) affirmation that there is a dearth of randomized studies
on the efficacy of FCC intervention models due to practical and ethi-
cal reasons. The adoption of quasi-experimental and descriptive
research designs was reflected in the selection of instruments used to
measure the outcomes of FCC delivery, notably the MPOC (King
et al., 1995). The MPOC provides a measurement of FCC procedures
rather than providing an explicit assessment of the fidelity of services
to FCC theoretical principles. This self-report tool, which consists of
both parent and professional forms, is completed directly by key
stakeholders and reports experiential outcomes. In investigating the
quasi-experimental and descriptive methodologies employed as part
of this review, it is argued that these methods are appropriate in
reflecting the fluid and complex nature of examining a philosophy of
care empirically.
4.3 | Limitations and strengths
The PRISMA guidelines (Moher et al., 2009) were employed to inform
the search procedure utilized and to ensure a high standard of meth-
odology employed. Furthermore, this review was registered on PROS-
PERO prior to undertaking searches. The use of second screeners,
extractors and raters at each stage of review process minimized the
risk of bias and ensured the quality of the process. A key asset of this
review was the relatively high methodological quality of selected
studies despite the outlined difficulties in relation to the explicit
reporting of study research designs.
Due to the universality of FCC in paediatric healthcare, it is possi-
ble that studies that explored the operationalization of care to chil-
dren with disabilities within these settings but did not explicitly
specify the implementation of an FCC professional model/
nomenclature were excluded unintentionally. In an effort to minimize
this risk, the search strategy in the current systematic review was
informed by key reviews in the FCC literature on paediatric disability
and hospital care (Dempsey & Keen, 2008; Dunst et al., 2007; Shields,
Zhou, Pratt, et al., 2012; Shields, Zhou, Taylor, et al., 2012; Watts
et al., 2014), and therefore, every effort to maximize literature satura-
tion has been outlined. In consideration of procedures taken to
strengthen the methodological rigour of this review, and efforts taken
MCCARTHY AND GUERIN
to ameliorate the outlined limitations, it is asserted that the findings
of this review are reported with confidence.
5 | C O N CL U S I O N
This review was inspired by two key empirical models of FCC that
outline the processes and outcomes of FCC for children with disabil-
ities and their families (Dempsey & Keen, 2008; Dunst et al., 2006,
2007). A need was identified to develop an up-to-date and expedient
visual overview of family-centred processes and outcomes that can
meaningfully contextualize the dynamic experience of FCC within an
ecological system. The processes and outcomes of FCC and factors
that impact on the delivery of FCC were identified across 42 empirical
papers and represented visually. This synthesis hence provides a theo-
retical summary of FCC in EI and offers both critical commentary and
recommendations for the exploration of FCC in future research.
ACKNOWLEDGEMEN TS
The contribution of Ruth Groarke, Jennifer Shore, Kevin Hughes and
Faye Darcy as independent screeners, raters and reviewers is
acknowledged.
This research was supported by the Health Service Executive
(HSE) National Disability Services and was managed by CHO Area
5 as part of the sponsorship of the first author's PhD. Open access
funding enabled and organized by IReL.
CONF LICT OF IN TE RE ST S
The authors declare no conflicts of interest.
ETHI CS APPROVAL STATEMENT
As this study was a systematic review, it did not require ethics approval.
PERMISSI ON TO REPRODUCE MATERI AL FROM OTHER
SOUR CES
This article includes no material from other sources.
DATA AVAI LAB ILITY S TATEMENT
The data that support the findings of this systematic review are avail-
able from the corresponding author upon reasonable request.
ORCID
Elaine McCarthy https://orcid.org/0000-0003-0744-9495
Suzanne Guerin https://orcid.org/0000-0002-6744-7590
RE FE R ENC E S
Abidin, R. R. (1995). Parenting Stress Index (PSI) manual (3rd ed.). Pediatric
Psychology Press.
Ahn, H., Reiman, S., O'Connor, J., Michalopoulos, L. T. M., Naeem, S., &
Shaw, T. V. (2011). Evaluating the implementation of family centered prac-
tice in Maryland: July 1, 2010–June 30, 2011. Retrieved from the Univer-
sity of Maryland Baltimore website: http://hdl.handle.net/10713/1721
Akçamete, G., & Kargın, T. (1996). Determining the needs of mothers with
hearing impaired children. Ankara University Faculty of Educational
29
Sciences Special Education Journal, 2(02), 7–24. https://doi.org/10.
1501/Ozlegt_0000000031
Arnadottir, U., & Egilson, S. T. (2012). Evaluation of therapy services with
the Measure of Processes of Care (MPOC-20): The perspectives of
Icelandic parents of children with physical disability. Journal of Child
Health Care, 16(1), 62–74. https://doi.org/10.1177/
1367493511423769
Bailey, D. B., Hebbeler, K., & Bruder, M. B. (2006). Family outcomes sur-
vey. Retrieved from: http://ectacenter.org/pdfs/eco/FOS-PartC_11-
16-06.pdf
Bailey, D. B., & Simeonsson, R. J. (1988). Assessing needs of families with
handicapped infants. The Journal of Special Education, 22(1), 117–127.
https://doi.org/10.1177/002246698802200113
Beach Center on Disability. (2003). Family Quality of Life Scale. University
of Kansas.
Bosak, D. L., Jarvis, J. M., & Khetani, M. A. (2019). Caregiver creation of
participation-focused care plans using participation and environment
measure plus (PEM+), an electronic health tool for family-centred
care. Child: Care, Health and Development, 45(6), 791–798. https://doi.
org/10.1111/cch.12709
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qual-
itative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/
1478088706qp063oa
Braun, V., & Clarke, V. (2014). What can “thematic analysis” offer health
and wellbeing researchers? International Journal of Qualitative Studies
on Health and Well-Being, 9, 26152. https://doi.org/10.3402/qhw.v9.
26152
Brotherson, M. J., Brady, S. J., & Tagher, M. R. (1993). Working with fami-
lies to develop and implement an individualized family service plan: A
rural inservice training model. Rural Special Education Quarterly, 12(1),
47–54. https://doi.org/10.1177/875687059301200108
Bruder, M. B., & Dunst, C. J. (2008). Factors related to the scope of early
intervention service coordinator practices. Infants & Young Children,
21(3), 176–185. https://doi.org/10.1097/01.IYC.0000324547.
54693.18
Bruininks, R. H., Woodcock, R. W., Weatherman, R. F., & Hill, B. K. (1984).
Scales of Independent Behavior Revised-Early Development Form.
Riverside Publishing.
Carter, B., & Thomas, M. (2011). Key working for families with young dis-
abled children. Nursing Research and Practice, 2011, 397258. https://
doi.org/10.1155/2011/397258
Chen, K., Hsieh, C., Sheu, C., Hu, F., & Tseng, M. (2009). Reliability and
validity of a Chinese version of the pediatric evaluation of disability
inventory in children with cerebral palsy. Journal of Rehabilitation Medi-
cine, 41(4), 273–278. https://doi.org/10.2340/16501977-0319
Chong, W. H., Goh, W., Tang, H. N., Chan, W. P., & Choo, S. (2012). Ser-
vice practice evaluation of the early intervention programs for infants
and young children in Singapore. Children's Health Care, 41(4), 281–
301. https://doi.org/10.1080/02739615.2012.721719
Crnic, K. A., & Greenberg, M. T. (1990). Minor parenting stresses with
young children. Child Development, 61(5), 1628–1637. https://doi.org/
10.2307/1130770
Dall'Alba, L., Gray, M., Williams, G., & Lowe, S. (2014). Early intervention in
children (0–6 years) with a rare developmental disability: The occupa-
tional therapy role. Hong Kong Journal of Occupational Therapy, 24(2),
72–80. https://doi.org/10.1016/j.hkjot.2014.12.001
Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family, and pro-
fessional support characteristics on the quality of life in families of
young children with disabilities. Journal of Intellectual and Developmen-
tal Disability, 34(2), 153–162. https://doi.org/10.1080/
13668250902874608
Dempsey, I. (1995). The Enabling Practices Scale: The development of an
assessment instrument for disability services. Australia and
New Zealand Journal of Developmental Disabilities, 20, 67–73. https://
doi.org/10.1080/07263869500035451
30
Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in
family-centered services for children with a disability. Topics in Early
Childhood Special Education, 28(1), 42–52. https://doi.org/10.1177/
0271121408316699
Dempsey, I., Keen, D., Pennell, D., O'Reilly, J., & Neilands, J. (2009). Parent
stress, parenting competence and family-centered support to young
children with an intellectual or developmental disability. Research in
Developmental Disabilities, 30(3), 558–566. https://doi.org/10.1016/j.
ridd.2008.08.005
Dias, P. C., & Cadime, I. (2019). Child and family-centered practices in early
childhood education and care services: An empirical study with
families and practitioners in Portugal. Child & Adolescent Social Work
Journal, 36(3), 285–294. https://doi.org/10.1007/s10560-019-
00599-7
Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A.,
Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., Riley, R., &
Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the
literature on access to healthcare by vulnerable groups. BMC Medical
Research Methodology, 6(1), 35. https://doi.org/10.1186/1471-2288-
6-35
Dodd, B., Hua, Z., Crosbie, S., Holm, A., & Ozanne, A. (2002). Manual of
Diagnostic Evaluation of Articulation and Phonology. The Psychological
Corporation Ltd.
Douglas, S. N., Meadan, H., & Kammes, R. (2020). Early interventionists'
caregiver coaching: A mixed methods approach exploring experiences
and practices. Topics in Early Childhood Special Education, 40(2), 84–96.
https://doi.org/10.1177/0271121419829899
Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and empowering families:
Principles and guidelines for practice. Brookline.
Dunst, C. J., Jenkins, V., & Trivette, C. M. (1984). Family support scale:
Reliability and validity. Wellness Perspectives: Journal of Individual, Fam-
ily and Community Wellness, 1, 45–52.
Dunst, C. J. (2002). Family-centered practices: Birth through high school.
The Journal of Special Education, 36(3), 141–149. https://doi.org/10.
1177/00224669020360030401
Dunst, C. J. (2005). Framework for practicing evidence-based early child-
hood intervention and family support. CASEinPoint, 1(1), 1–11. Avail-
able from. http://www.puckett.org/ubcreadings/ECED-4.pdf
Dunst, C. J., & Masiello, T. L. (2002). Everyday Parenting Scale. Winterberry
Press.
Dunst, C. J., & Trivette, C. M. (1996). Empowerment, effective helpgiving
practices and family-centered care. Pediatric Nursing, 22(4), 334–338.
Available from. https://pubmed.ncbi.nlm.nih.gov/8852113/
Dunst, C. J., & Trivette, C. M. (2009). Capacity-building family-systems
intervention practices. Journal of Family Social Work, 12(2), 119–143.
https://doi.org/10.1080/10522150802713322
Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2006). Family Support Pro-
gram Quality and Parent, Family and Child Benefits. Winterberry Press
Monograph Series. Winterberry Press.
Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of
family-centered helpgiving practices research. Developmental Disabil-
ities Research Reviews, 13(4), 370–378. https://doi.org/10.1002/mrdd.
20176
Dyke, P., Buttigieg, P., Blackmore, A. M., & Ghose, A. (2006). Use of the
Measure of Process of Care for families (MPOC-56) and service pro-
viders (MPOC-SP) to evaluate family-centred services in a paediatric
disability setting. Child: Care, Health and Development, 32(2), 167–176.
https://doi.org/10.1111/j.1365-2214.2006.00604.x
Early Childhood Outcomes Center (ECO Center). (2006). Child Outcomes
Summary Form. Retrieved from: http://www.fpg.unc.edu/eco/
assets/pdfs/Child_Outcomes_Summary_Form_4-21-06-2.pdf
Eliasson, A. C., Krumlinde-Sundholm, L., Rösblad, B., Beckung, E.,
Arner, M., Ohrvall, A. M., & Rosenbaum, P. (2005). Manual Ability Clas-
sification System for children with cerebral palsy 4–18 years.
Retrieved from: http://www.macs.nu/files/MACS_English_2010.pdf
MCCARTHY AND GUERIN
Ely, M. S., & Ostrosky, M. M. (2018). Applying the foundational concepts
from early intervention to services provided to young children with
visual impairments: A literature review. Journal of Visual Impairment &
Blindness, 112(3), 225–238. https://doi.org/10.1177/
0145482X1811200302
Espe-Sherwint, M. (2008). Family-centred practice: Collaboration, compe-
tency and evidence. Support for Learning, 23(3), 136–143. https://doi.
org/10.1111/j.1467-9604.2008.00384.x
Fauzi, N. F. M., Ern, M. A. C., Rasdi, H. F. M., & Saat, N. Z. M. (2015). The
Measure of Processes of Care 20-Item (MPOC-20): Validity and reli-
ability of the Malay version. Jurnal Sains Kesihatan Malaysia, 13(2), 61–
67. https://doi.org/10.17576/jskm-2015-1302-07
Fordham, L., Gibson, F., & Bowes, J. (2012). Information and professional
support: Key factors in the provision of family-centred early childhood
intervention services. Child: Care, Health and Development, 38(5), 647–
653. https://doi.org/10.1111/j.1365-2214.2011.01324.x
Fyffe, C., Gavidia-Payne, S., & McCubbery, J. (1995). Early intervention
and families in rural Victoria. Australian Journal of Early Childhood,
20(4), 34–39. https://doi.org/10.1177/183693919502000407
García-Grau, P., Martínez-Rico, G., McWilliam, R. A., & Cañadas Pérez, M.
(2020). Typical and ideal practices in early intervention in Spain during
a transformation process of professional practices. Journal of Early
Intervention, 42(1), 3–19. https://doi.org/10.1177/
1053815119859046
García-Grau, P., McWilliam, R. A., Martínez-Rico, G., & Morales-
Murillo, C. P. (2019). Child, family, and early intervention characteris-
tics related to family quality of life in Spain. Journal of Early Interven-
tion, 41(1), 44–61. https://doi.org/10.1177/1053815118803772
Gavidia-Payne, S., Matthews, J., Hudson, A., Richdale, A., & Nankervis, K.
(2003, February). Stress in parents of children with disabilities: The
Parenting Hassles Scale. Paper presented at the Helping Families
Change Conference, Sydney.
Gavidia-Payne, S., Meddis, K., & Mahar, N. (2015). Correlates of child and
family outcomes in an Australian community-based early childhood
intervention program. Journal of Intellectual and Developmental Disabil-
ity, 40(1), 57–67. https://doi.org/10.3109/13668250.2014.983056
Gràcia, M., Simo  n, C., Salvador-Beltran, F., Adam Alcocer, A. L., Mas, J. M.,
Giné, C., & Dalmau, M. (2020). The transition process from center-
based programmes to family-centered practices in Spain: A multiple
case study. Early Child Development and Care, 190(14), 2192–2204.
https://doi.org/10.1080/03004430.2018.1564916
Halldorsdottir, H., & Birgisdottir, N. B. (2006). Family-centred service to chil-
dren with disability and their families: A research plan. [Fjo¨lskyldumiˇ quˇ
q Þjo´nusta viˇ q fo¨tluˇ q bo¨rn og fjo¨lskyldur Þeirra:
Rannso'knara'ætlun]. [Unpublished BS Thesis]. University of Akureyri.
Available at: http://hdl.handle.net/1946/194
Henneman, E. A., & Cardin, S. (2002). Family-centered critical care: A prac-
tical approach to making it happen. Critical Care Nurse, 22(6), 12–19.
https://doi.org/10.4037/ccn2002.22.6.12
Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J.,
Eulenberg, J. B., Chester, K. Jr., Johnson, B., Michalsen, L., Evatt, M., &
Taylor, K. (2011). Developing and validating the communication func-
tion classification system for individuals with cerebral palsy. Develop-
mental Medicine and Child Neurology, 53(8), 704–710. https://doi.org/
10.1111/j.1469-8749.2011.03996.x
Hwang, A. W., Chao, M. Y., & Liu, S. W. (2013). A randomized controlled
trial of routines-based early intervention for children with or at risk for
developmental delay. Research in Developmental Disabilities, 34(10),
3112–3123. https://doi.org/10.1016/j.ridd.2013.06.037
Ideishi, R. I., O'Neil, M. E., Chiarello, L. A., & Nixon-Cave, K. (2010). Per-
spectives of therapist's role in care coordination between medical and
early intervention services. Physical & Occupational Therapy in Pediat-
rics, 30(1), 28–42. https://doi.org/10.3109/01942630903337478
 lfsdo
Ingo  ttir, J. G., Egilson, S. T., & Traustado ttir, R. (2017). Family-centred
services for young children with intellectual disabilities and their
MCCARTHY AND GUERIN
families: Theory, policy and practice. Journal of Intellectual Disabilities,
22(4), 361–377. https://doi.org/10.1177/1744629517714644
Innocenti, M. S., Roggman, L. A., & Cook, G. A. (2013). Using the PICCOLO
with parents of children with a disability. Infant Mental Health Journal,
34(4), 307–318. https://doi.org/10.1002/imhj.21394
Jansen, S. L. G., Van der Putten, A. A. J., & Vlaskamp, C. (2013). What par-
ents find important in the support of a child with profound intellectual
and multiple disabilities. Child: Care, Health and Development, 39(3),
432–441. https://doi.org/10.1111/j.1365-2214.2012.01381.x
Joanna Briggs Institute. (2014). The Joanna Briggs Institute reviewers man-
ual. Author.
Johnson-Martin, N. M., Attermeier, S. M., & Hacker, B. (2004). The Carolina
Curriculum for Infants and Toddlers with Special Needs (CCITSN). Paul
H. Brookes.
Kargin, T. (2004). Effectiveness of a family-focused early intervention pro-
gram in the education of children with hearing impairments living in
rural areas. International Journal of Disability, Development and Educa-
tion, 51(4), 401–418. https://doi.org/10.1080/
1034912042000295044
Khetani, M. A., Graham, J. E., Davies, P. L., Law, M. C., & Simeonsson, R. J.
(2015). Psychometric properties of the young children's participation
and environment measure. Archives of Physical Medicine and Rehabilita-
tion, 96(2), 307–316. https://doi.org/10.1016/j.apmr.2014.09.031
Khetani, M. A., Lim, H. K., & Corden, M. E. (2017). Caregiver input to opti-
mize the design of a pediatric care planning guide for rehabilitation:
Descriptive study. JMIR Rehabilitation and Assistive Technologies, 4(2),
e10–e10. https://doi.org/10.2196/rehab.7566
King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service deliv-
ery to children with chronic conditions and their families: Develop-
ment of a refined measure of processes of care (MPOC-20). Children's
Health Care, 33(1), 35–57. https://doi.org/10.1207/
s15326888chc3301_3
King, S., Rosenbaum, P. L., & King, G. (1995). The Measure of Processes of
Care (MPOC): A means to assess family-centred behaviours of health care
providers. Neurodevelopmental Clinical Research Unit, McMaster
University.
King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered
service for children with cerebral palsy and their families: A review of
the literature. Seminars in Pediatric Neurology, 11(1), 78–86. https://
doi.org/10.1016/j.spen.2004.01.009
Kiresuk, T. J., & Lund, S. H. (1976). Process and measurement using goal
attainment scaling. Education Studies Review Manual, 1, 53–71.
Kiresuk, T. J., & Sherman, R. E. (1968). Goal attainment scaling: A general
method for evaluating comprehensive community mental health pro-
grams. Community Mental Health Journal, 4(6), 443–453. https://doi.
org/10.1007/BF01530764
Kiresuk, T. J., Smith, A., & Cardillo, J. E. (Eds.) (1994). Goal attainment scal-
ing: Applications, theory and measurement. Eribaum and Associates.
Koren, P. E., DeChillo, N., & Friesen B. J. (1992). Measuring empowerment
in families whose children have emotional disabilities: A brief ques-
tionnaire. Rehabilitation Psychology, 37(4), 305–321. https://doi.org/
10.1037/h0079106
Law, M., Baptiste, S., McColl, M., Opzoomer, A., Polatajko, H., &
Pollock, N. (1990). The Canadian occupational performance measure:
An outcome measure for occupational therapy. Canadian Journal of
Occupational Therapy. Revue canadienne d'ergotherapie, 57(2), 82–87.
https://doi.org/10.1177/000841749005700207
Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., &
Rosenbaum, P. (2003). Factors affecting family-centred service deliv-
ery for children with disabilities. Child: Care, Health and Development,
29(5), 357–366. https://doi.org/10.1046/j.1365-2214.2003.00351.x
Leiter, V. (2004). Dilemmas in sharing care: Maternal provision of profes-
sionally driven therapy for children with disabilities. Social Science &
Medicine, 58(4), 837–849. https://doi.org/10.1016/S0277-9536(03)
00258-2
31
Lumpkin, J. R. (1985). Validity of a brief locus of control scale for survey
research. Psychological Reports, 57(2), 655–659. https://doi.org/10.
2466/pr0.1985.57.2.655
Mahoney, G., & O'Sullivan, P. (1990). Early intervention practices
with families of children with handicaps. Mental Retardation, 28(3),
169–176. Available from. https://psycnet.apa.org/record/1990-
26624-001
Mahoney, G., O'Sullivan, P. S., & Fors, S. (1989). The family practices of
service providers for young handicapped children. Infant Mental Health
Journal, 10(2), 75–83. https://doi.org/10.1002/1097-0355(198922)
10:2<75::AID-IMHJ2280100202>3.0.CO;2-L
Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2015). Services and
supports for young children with Down syndrome: Parent and pro-
vider perspectives. Child: Care, Health and Development, 41(3), 365–
373. https://doi.org/10.1111/cch.12162
McKean, K., Phillips, B., & Thompson, A. (2012). A family-centred model of
care in paediatric speech-language pathology. International Journal
of Speech-Language Pathology, 14(3), 235–246. https://doi.org/10.
3109/17549507.2011.604792
McWilliam, R. A. (2009). Goal Functionality Scale III-TP. Siskin Children's
Institute.
McWilliam, R. A. (2011). Families in Natural Environments Scale of Service
Evaluation. Siskin Children's Institute.
McWilliam, R. A., & Casey, A. M. (2013). Factor analysis of family quality
of life (FaQoL). Unpublished Manuscript, Nashville, TN, USA.
McWilliam, R. A., & Jung, L. A. (2001). Individualized Family Service Plan
Rating Scale. Unpublished Instrument, University of North Carolina at
Chapel Hill.
Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2009). Preferred
Reporting Items for Systematic Reviews and Meta-Analyses: The PRI-
SMA statement. Annals of Internal Medicine, 151(4), 264–269. https://
doi.org/10.7326/0003-4819-151-4-200908180-00135
Neff, J. M., Eichner, J. M., Hardy, D. R., & Klein, M. (2003). Family-centered
care and the pediatrician's role. Pediatrics, 112(3), 691–691. https://
doi.org/10.1542/peds.2011-3084
Nickbakht, M., Meyer, C., Scarinci, N., & Beswick, R. (2019). A qualitative
investigation of families' needs in the transition to early intervention
after diagnosis of hearing loss. Child: Care, Health and Development,
45(5), 670–680. https://doi.org/10.1111/cch.12697
Palisano, R., Rosenbaum, P., Bartlett, D., & Livingston, M. (2007).
GMFCS—E & R Gross motor function classification system, expanded
and revised. Retrieved from: http://motorgrowth.canchild.ca/en/
GMFCS/resources/GMFCSER.pdf
Phoenix, M., Smart, E., & King, G. (2020). ‘I didn't know what to expect’:
Describing parents' expectations in children's rehabilitation services.
Physical & Occupational Therapy in Pediatrics, 40(3), 311–329. https://
doi.org/10.1080/01942638.2019.1665155
Pickering, D., & Busse, M. (2010). Disabled children's services: How do we
measure family-centred care? Journal of Child Health Care, 14(2), 200–
207. https://doi.org/10.1177/1367493509360207
Pimentel, J. S. (2003). A escala de intervenç~ao focada na família: estudo da
sua validaç~ao. Psicologia, 17(1), 179–194. https://doi.org/10.17575/
rpsicol.v17i1.444
Raghavendra, P., Murchland, S., Bentley, M., Wake-Dyster, W., & Lyons, T.
(2007). Parents' and service providers' perceptions of family-centred
practice in a community-based, paediatric disability service in
Australia. Child: Care, Health and Development, 33(5), 586–592.
https://doi.org/10.1111/j.1365-2214.2007.00763.x
Renfrew, C. E. (1997). The Renfrew Language Scales: Action Picture Test.
Speechmark Publishing Ltd.
Ridgley, R., Snyder, P. A., & McWilliam, R. A. (2020). Individualized family
service plan quality and alignment of child-focused outcomes to fed-
eral outcomes and state early learning guidelines. Topics in Early Child-
hood Special Education, 39(4), 200–212. https://doi.org/10.1177/
0271121418786434
32
Robinshaw, H., & Evans, R. (2001). Service provision for preschool children
who are deaf: Parents' perspectives. Early Child Development and Care,
168(1), 63–91. https://doi.org/10.1080/0300443011680105
Roggman, L. A., Cook, G. A., & Jump Norman, V. K. (2008). Parent satisfac-
tion with the home visitor and home visit: A survey for parents. In
L. A. Roggman, L. K. Boyce, & M. S. Innocenti (Eds.), Developmental
parenting: A guide for early childhood professionals (pp. 206–208). Paul
H. Brookes Publishing.
Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-
centred service: A conceptual framework and research review. Physi-
cal & Occupational Therapy in Pediatrics, 18(1), 1–20. https://doi.org/
10.1080/J006v18n01_01
Rosenbaum, P. L., Palisano, R. J., Bartlett, D. J., Galuppi, B. E., &
Russell, D. J. (2008). Development of the gross motor function classifi-
cation system for cerebral palsy. Developmental Medicine and Child
Neurology, 50(4), 249–253. https://doi.org/10.1111/j.1469-8749.
2008.02045.x
Schenker, R., Parush, S., Rosenbaum, P., Rigbi, A., & Yochman, A. (2016). Is
a family-centred initiative a family-centred service? A case of a Con-
ductive Education setting for children with cerebral palsy. Child: Care,
Health and Development, 42(6), 909–917. https://doi.org/10.1111/
cch.12354
Shields, L. (2015). What is “family centred care”? European Journal for Per-
son Cantered Healthcare, 3(2), 139–144. https://doi.org/10.5750/
ejpch.v3i2.993
Shields, L., Zhou, H., Pratt, J., Taylor, M., Hunter, J., & Pascoe, E. (2012).
Family-centred care for hospitalised children aged 0–12 years.
Cochrane Database of Systematic Reviews (Online), 10(10), CD004811.
https://doi.org/10.1002/14651858.CD004811.pub3
Shields, L., Zhou, H., Taylor, M., Hunter, J., Munns, A., & Watts, R. (2012).
Family-centred care for hospitalised children aged 0–12 years: A sys-
tematic review of quasi-experimental studies. JBI Library of Systematic
Reviews JBL000423, 10(39), 2559–2592. https://doi.org/10.11124/
jbisrir-2012-32
Simeonsson, R. J., Bailey, D. B., Huntington, G. S., & Brandon, L. (1991).
Scaling and attainment of goals in family-focused early intervention.
Community Mental Health Journal, 27(1), 77–83. https://doi.org/10.
1007/BF00752717
Sparrow, S. S., Balla, D. A., Cicchetti, D. V., & Doll, E. A. (2005). Vineland II:
Vineland Adaptive Behavior Scales. American Guidance Service.
Stefánsdo  ttir, S., & Tho
 ra Egilson, S. (2016). Diverging perspectives on
children's rehabilitation services: A mixed-methods study. Scandinavian
Journal of Occupational Therapy, 23(5), 374–382. https://doi.org/10.
3109/11038128.2015.1105292
Stein, R. E., & Riessman, C. K. (1980). The development of an impact-on-
family scale: Preliminary findings. Medical Care, 18(4), 465–472.
https://doi.org/10.1097/00005650-198004000-00010
Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M.,
Emerson, E., Koskentausta, T., & Tonge, B. J. (2007). Short form of the
developmental behaviour checklist. American Journal of Mental Retar-
dation: AJMR, 112(1), 31–39. https://doi.org/10.1352/0895-8017
(2007)112[31:SFOTDB]2.0.CO;2
Tainsh, R., & Gavidia-Payne, S. (2006). Accommodations in families of chil-
dren with a disability: Differences in disability type and parental has-
sles. Unpublished Manuscript, School of Health Sciences, RMIT
University, Bundoora, Australia.
Tew, S. P., & Ahmad Fauzi, A. (2020). Parental perceptions of paediatric
rehabilitation services using the Malay measure of processes of care.
Child: Care, Health and Development, 46(5), 585–590. https://doi.org/
10.1111/cch.12773
Thomas-Stonell, N. L., Oddson, B., Robertson, B., & Rosenbaum, P. L.
(2010). Development of the FOCUS (focus on the outcomes of com-
munication under six), a communication outcome measure for pre-
school children. Developmental Medicine and Child Neurology, 52(1),
47–53. https://doi.org/10.1111/j.1469-8749.2009.03410.x
MCCARTHY AND GUERIN
Ueda, K., & Yonemoto, N. (2020). Impacts of early intervention on family
outcomes: A multicenter cross-sectional study in Japan. Disability and
Health Journal, 13(1), 100832. https://doi.org/10.1016/j.dhjo.2019.
100832
Ueda, K., Yonemoto, N., & Bailey, D. B. (2015). Psychometric validation of
the family outcomes survey-revised in Japan. Research in Developmen-
tal Disabilities, 39, 55–66. https://doi.org/10.1016/j.ridd.2015.01.003
van Schie, P. E., Siebes, R. C., Ketelaar, M., & Vermeer, A. (2004). The mea-
sure of processes of care (MPOC): Validation of the Dutch translation.
Child: Care, Health and Development, 30(5), 529–539. https://doi.org/
10.1111/j.1365-2214.2004.00451.x
Vidarsdottir, G. S., Vilbergsdottir, L. D., & Stefansdottir, P. S. (2010).
Fjo¨lskyldumiDuD þjo´nusta a´ Æfingasto¨Dinni: mat fagfo´lks sem þar
starfar (Family centred service at Æfingasto¨Din: Professional's view).
[Unpublished BS Thesis]. University of Akureyri Retrieved from: http://
hdl.handle.net/1946/5805
Wang, T. M., Su, C. W., Liao, H. -F., Lin, L. Y., Chou, K. S. & Lin, S. H.
(1998). Comprehensive Developmental Inventory for Infants and Tod-
dlers (CDIIT). Psychol. Test, 45, 19–46. https://doi.org/10.1037/
t77475-000
Washington, K. N., Thomas-Stonell, N., McLeod, S., & Warr-Leeper, G.
(2012). Parents' perspectives on the professional-child relationship
and children's functional communication following speech-language
intervention. Canadian Journal of Speech-Language Pathology & Audiol-
ogy, 36(3), 220–233. Available from. https://cjslpa.ca/files/2012_
CJSLPA_Vol_36/No_03_176_263/Washington_Thomas-Stonell_
McLeod_Warr-Leeper_CJSLPA.pdf
Watts, R., Zhou, H., Shields, L., Taylor, M., Munns, A., & Ngune, I. (2014).
Family-centered care for hospitalized children aged 0–12 years: A sys-
tematic review of qualitative studies. JBI Database of Systematic
Reviews and Implementation Reports, 12(7), 204–283. https://doi.org/
10.11124/jbisrir-2014-1683
Wildridge, V., & Bell, L. (2002). How CLIP became ECLIPSE: A mnemonic
to assist in searching for health policy/management information.
Health Information and Libraries Journal, 19(2), 113–115. https://doi.
org/10.1046/j.1471-1842.2002.00378.x
Wilkins, A., Leonard, H., Jacoby, P., MacKinnon, E., Clohessy, P.,
Forouhgi, S., & Slack-Smith, L. (2010). Evaluation of the processes of
family-centred care for young children with intellectual disability in
Western Australia. Child: Care, Health and Development, 36(5), 709–
718. https://doi.org/10.1111/j.1365-2214.2010.01104.x
Woodside, J. M., Rosenbaum, P. L., King, S. M., & King, G. A. (2001). Fam-
ily-centered service: Developing and validating a self-assessment tool
for pediatric service providers. Children's Health Care, 30(3), 237–252.
https://doi.org/10.1207/S15326888CHC3003_5
SUPPORTING INF ORMATION
Additional supporting information may be found in the online version
of the article at the publisher's website.
How to cite this article: McCarthy, E., & Guerin, S. (2022).
Family-centred care in early intervention: A systematic review
of the processes and outcomes of family-centred care and
impacting factors. Child: Care, Health and Development, 48(1),
1–32. https://doi.org/10.1111/cch.12901