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An Integrative Review of Current Practice
Models and/or Process of Family-Centered
Early Intervention for Children Who Are
Deaf or Hard of Hearing
Ntsako P. Maluleke, MA; Katijah Khoza-Shangase, PhD; Amisha Kanji, PhD
Over the past few decades, there has been an increasing shift toward emphasizing the importance of the
child’s family taking an active role in the habilitation process through family-centered early intervention (FCEI)
programs. Accordingly, the Health Professions Council of South Africa recommends that early intervention
services following confirmation of hearing loss must be family-centered within a community-based model of
service delivery that is culturally congruent. The aim of this study was to explore and document current
evidence reflecting trends in FCEI for children who are deaf or hard of hearing (DHH) by identifying and
describing current practice models and/or processes of FCEI for these children. This study describes our first
steps in formulating a framework for FCEI for children who are DHH in South Africa. An integrative literature
review was conducted. Sage, Science Direct, PubMed, and Google Scholar databases were searched for
studies published in English between January 2009 and January 2019 reporting on FCEI programs for
children who are DHH. Studies that focused on the following were excluded from the study: speech and
language outcomes of children, youth, and adults who are DHH; education for children who are DHH;
universal newborn hearing screening; professionals’ roles in early hearing detection and intervention; diagnosis
of hearing loss; and sign language. Kappa statistics were performed to determine agreement between
reviewers. Twenty-two studies were included in the review. Cohen’s kappa revealed a substantial agreement
(κ=0.8) between reviewers for data extraction and synthesis in terms of the articles that met the criteria for
inclusion in the review. Findings were discussed under 5 themes: caregiver involvement; caregiver
coaching/information sharing; caregiver satisfaction; challenges with FCEI; and telehealth. Generally, there is
sufficient evidence for FCEI, with caregivers indicating the need for full involvement in their children’s care.
Methods of caregiver involvement involving caregiver coaching/information sharing need to be culturally and
linguistically appropriate, with sensitivities around time and manner. This increases caregiver satisfaction with
intervention programs and improves outcomes for children who are DHH. Challenges identified by the studies
raise implications for early hearing detection and intervention programs, as well as Departments of Health and
Social Welfare. These included logistical challenges, professional-related challenges, and caregiver-related
challenges. Various aspects of FCEI have been reported in the review. Findings of these studies have
significant implications for the formulation of quality FCEI programs to ensure contextually relevant and
contextually responsive care of children who are DHH.
Key words: deaf or hard of hearing, early hearing detection and intervention, early intervention, FCEI
Author Affiliations: Department of Speech-Language Pathology
and Audiology, School of Health Care Sciences, Sefako Makgatho
Health Sciences University, Pretoria North, Gauteng Province,
South Africa (Ms Maluleke); and Department of Speech Pathology
and Audiology, School of Human and Community Development,
University of the Witwatersrand, Johannesburg, South Africa (Prof.
Khoza-Shangase and Dr Kanji).
The current authors have no financial ties to products in the study
or potential/perceived conflicts of interest.
Supplemental digital content is available for this article. Direct
URL citation appears in the printed text and is provided in the
HTML and PDF versions of this article on the journal’s Web site
(www.familyandcommunityhealth.com).
Correspondence: Ntsako P. Maluleke, MA, Department of
Speech-Language Pathology and Audiology,School of Health Care
Sciences, Sefako Makgatho Health Sciences University, PO Box
THE CONCEPT of family-centered practice
made an appearance in discussions about early
intervention (EI) in the early 1980s and has become
an integral principle guiding the design and deliv-
ery of service models since then.1Consequently,
over the past few decades, there has been an
accelerating shift toward emphasizing the impor-
tance of the child’s family taking an active role
in the habilitation process through family-centered
early intervention (FCEI) programs.2FCEI is a
72, Medunsa 0204, Pretoria North, Gauteng Province, South Africa
(ntsako.maluleke@smu.ac.za).
Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.
DOI: 10.1097/FCH.0000000000000276
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Family and Community Health January–March 2021 ■Volu me 44 ■Number 1 59
60 Family and Community Health January–March 2021 ■Volu me 44 ■Number 1
family-professional partnership that places the
needs of the child in the context of their family3
to optimize the child’s developmental outcomes.4
“Family-centered early intervention” is the pre-
ferred term in pediatric care, where families are
most involved with their children, and its purpose
is to educate, support, and empower family mem-
bers and the family system of the child who is
deaf or hard of hearing (DHH).5Recognizing the
centrality of family-child interactions represents a
paradigm shift from viewing the caregiver as a pe-
ripheral player in child-focused interventions to a
service delivery model where professionals focus
on strengthening family interactions.6This position
fundamentally challenges the care paradigm of uni-
lateral responsibility for decision making by the
professional.7
FCEI is a philosophy, belief, and values from
which professionals support the development and
capacities of families to promote the progress of the
child with disabilities.1,8 It is based on the follow-
ing principles: (1) The client is the child and their
family rather than just the child; therefore, the best
way to meet the needs of the child who is DHH
is to acknowledge the needs of the family mem-
bers as well.1,7,9 (2) Caregivers are invited to be-
come involved in their child’s care and have the op-
portunity to share their opinions, expertise, needs,
and preferences with professionals.5,10 (3) Informa-
tion sharing between the professional and the care-
giver is open, objective, and unbiased to ensure that
families can make appropriate decisions that best
t the needs, strengths, and values of the child and
family.5,7 (4) Caregivers are encouraged to collab-
orate with professionals to acquire knowledge and
competencies that allow them to mediate or extend
the intervention for their child who is DHH; con-
versely, professionals acknowledge the family mem-
bers as the expert of their child’s development.5,11
(5) Social opportunities through parent-to-parent
support, which affords families of the child who is
DHH an opportunity to network and meet other
families of children who are DHH.10,12
In South Africa, EI services following diagnosis of
a child’s hearing loss must be family-centered within
a community-based model of service delivery that
is culturally congruent.13 The authors of this arti-
cle agree with the Health Profession’s Council of
South Africa’s13 recommendations and argue that
establishing FCEI programs for children who are
DHH can mitigate the inequities associated with ac-
cess to health care.14,15 This is particularly relevant
to South Africa where access to health care services
is signicantly affected by an overburdened health
care system, linguistic barriers between health care
professionals and patients, as well as cultural
diversity. Typically, these challenges mostly affect
the already vulnerable members of the population in
rural and poverty-stricken Black communities.14-16
The South African context is characterized by a
quadruple burden of disease whereby the HIV/AIDS
epidemic coexists with a burden of tuberculosis,
high maternal and child mortality, high levels of vi-
olence and injuries, as well as a growing burden
of noncommunicable diseases.17,18 Within this con-
text, infant hearing loss is viewed as less urgent
and has consequently received lesser nancial at-
tention and political will from the Department of
Health.18,19
In addition to an overburdened health care sys-
tem, South Africa has 11 ofcial languages, which
the constitution states must all enjoy equal esteem
and treatment.20 However, English is the promi-
nent language in political, educational, and social
settings.21 This is despite the fact that English is
spoken by 10% of the population as their home
language22 and is thus viewed as a language of
power and prestige.21 This effect creates and per-
petuates a structural paradox, which does not re-
spond to the population’s needs,23 with more than
11 million Black South Africans receiving health
care services in a language that is not their home
language.15 Moreover, language is closely tied to
identity and culture.21,24 Wegner and Rhoda25 de-
ne culture broadly as a people’s way of life, in-
teraction with the world, and behavior in certain
situations. They argue that culture can be consid-
ered as a combination of religious beliefs, socially
accepted norms, and traditions.25 In South Africa,
audiologists are largely female, white, and English-
or Afrikaans-speaking and thus do not represent the
cultural diversity of the country’s population.26
In postapartheid South Africa, these cultural dif-
ferences replicate historical power dynamics, which
may result in patients not feeling condent to re-
quest clarication or indicate when they have not
understood some information.27 Most importantly,
evidence on global health indicates that groups
that do not form part of the dominant culture
have worse health outcomes than the dominant
populations.28 This effect creates a cycle of exclu-
sion of the patient and family from receiving effec-
tive treatment or care.23 However, FCEI programs
have the potential to eliminate this cycle of ex-
clusion, as the family roles and responsibility are
strengthened, allowing caregivers their rightful po-
sition as advocates, decision makers, and partners
with EI professional.29 Children spend a signicant
amount of time with their caregivers and families;
thus, the family is the most effective and economi-
cal system for fostering and sustaining the child’s de-
velopment. Hence, FCEI programs can ensure that
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
N. P. Maluleke et al. Family-Centered Early Intervention 61
EI efforts provide optimal benet for patients and
do not distance them linguistically and culturally.23
This article forms part of a larger research project
and describes our rst steps in formulating a frame-
work for FCEI for children who are DHH in South
Africa, by identifying and describing current prac-
tice models and/or processes of FCEI for these
children.
METHODS
An integrative literature review for the development
of concepts was conducted to explore and doc-
ument current evidence reecting trends in FCEI
for children who are DHH. Although integrative
in nature through the inclusion of experimental
and nonexperimental studies,30 this study was con-
ducted with the same rigor as a systematic review
in terms of an academic database search with clear
parameters.
Search strategy
A comprehensive search was conducted of ar-
ticles on FCEI services for children who are
DHH. A computer-aided search of 4 online journal
databases, including Sage, Science Direct, PubMed,
and Google Scholar, was undertaken. The follow-
ing key words were used: “family centered care,”
“family-centered early intervention,” “early inter-
vention,” “early hearing detection and interven-
tion,” and “hearing loss.” The Boolean operator
“AND”was used between the phrases. MeSH terms
were used in addition to author key words. The
databases used were chosen on the basis of their
content matter and accessibility to the researcher.
Searches were supplemented with a rigorous
manual review of the reference lists of the arti-
cles included to obtain additional articles. All pub-
lished, peer-reviewed studies within the last 10 years
(January 2009-January 2019) were considered for
review. A period of 10 years was chosen to en-
sure that the information was current evidence be-
cause the aim of the study was to review current
evidence that would allow for the formulation of
a framework for FCEI for children who are DHH
in South Africa, by identifying and describing cur-
rent practice models and/or processes of FCEI for
these children. Furthermore, this time frame was se-
lected as this is the period of postapartheid South
Africa, where the main study to which the current
study is linked is located and where EI started re-
ceiving much attention. It is acknowledged that the
time frame selected could have limited inclusion of
seminal studies in the eld, which might have inu-
enced current ndings, hence the importance of be-
ing cognizant of this limitation in the interpretation.
The researcher identied all the articles for review.
Two additional reviewers reviewed all articles that
were included or excluded from the review to ensure
the reliability and validity of the process of identify-
ing the relevant articles. Kappa statistics were per-
formed to determine agreement between reviewers.
Inclusion criteria
Articles selected for inclusion in this study were
original pieces of scientic work or reports pub-
lished in peer-reviewed scientic journals. The focus
was on FCEI services for children who are DHH. All
the articles were published in English. Gray litera-
ture was not included in this review.
All the articles selected for inclusion were inde-
pendently identied by all reviewers using prede-
ned abstraction. Disagreements on articles selected
for inclusion were resolved through discussion and
consensus among all authors of this article. Where
consensus was not reached, the leading author made
the nal decision. Second, authors provided a nar-
rative synthesis of the ndings from the studies that
met the inclusion criteria. Cohen’s kappa revealed
a substantial agreement (κ=0.8) between review-
ers for data extraction and synthesis in terms of
the articles that met the criteria for inclusion in the
review.
Data extraction and synthesis
In total, 23 645 articles that contained the search
key words were screened. Sixty-one of these were
based on FCEI services for children who are DHH,
whereas 23 584 investigated speech and language
outcomes for children, youth, and adults who are
DHH; education for children who are DHH; univer-
sal newborn hearing screening (UNHS); profession-
als’ roles in early hearing detection and intervention
(EHDI); diagnosis of hearing loss; and sign lan-
guage. Thirty-nine of the 61 articles were excluded
because they focused on ages for initiation of EHDI
services, as well as the nature of services received;
causes of the hearing loss, medical management and
strategies to optimize hearing; history of UNHS and
the progress made; and health-related quality of
life. Nineteen of the excluded articles were literature
reviews, scoping reviews, or systematic reviews.
Ultimately 22 peer-reviewed research studies
were included in this review. These included 16 sur-
veys, 4 exploratory cohort studies, 1 prospective
short-term longitudinal pretest/posttest design, and
1 retrospective research design study. The synthesis
included the research focus, context, method of im-
plementation and format, and outcomes. The Table
outlines the process of selecting studies for inclusion
in this review. The studies included in this review
were heterogeneous as they included quantitative,
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
62 Family and Community Health January–March 2021 ■Volu me 44 ■Number 1
TABLE. Description of the Search Results Identifying Articles for the
Integrative Review
Procedural Steps No. Articles Description
Records identified in the
database search
23 713 4 electronic databases used (Sage, Science Direct,
PubMed, and Google Scholar)
Records after duplications
removed
23 636 77 duplications removed
Additional records through
identified other sources
9Reviewed reference lists of articles included in the review to
identify additional, relevant records
Records screened 23 645 Articles that contained the search key words
Records excluded 23 584 Articles investigated speech and language outcomes for
DHH children, youth, and adults; education for DHH
children; UNHS; professionals’ roles in EHDI; diagnosis
of hearing loss and sign language
Full-text articles assessed for
elegibility
61 Articles based on FCEI services for DHH children
Full-text articles excluded 39 Focused on ages at identification of hearing loss and
initiation of EI services, as well as the nature of services
received; causes of the hearing loss, medical
management and strategies to optimize hearing; history
of UNHS and the progress made; and health-related
quality of life
Studies included in the review 22 Articles forming part of the integrative review
Abbreviations: DHH, deaf or hard of hearing; EHDI, early hearing detection and intervention; EI, early intervention; FCEI, family-centered early interven-
tion; UNHS, universal newborn hearing screening.
qualitative, and mixed-methods studies, hence the
integrative nature of the study.30
RESULTS AND DISCUSSION
The range of FCEI services provided for children
who are DHH included in this articles is sum-
marized in Appendix 1 (see Supplemental Digital
Content, available at: http://links.lww.com/FCH/
A23)—depicting the research focus, methods of im-
plementation and formats, and outcomes. With a
total sample size of 22 articles, data synthesis re-
vealed 5 themes. Ten of the 22 articles were rele-
vant to more than 1 category or theme, resulting
in a total sample of 32 articles. Percentages were
calculated on the total number of 32 articles. The
5 themes that were identied are as follows: care-
giver involvement (n =5; 16%); caregiver coaching/
information sharing (n =12; 38%); caregiver satis-
faction (n =4; 13%); challenges of FCEI (n =11;
34%); and telehealth (n =3; 9%). The studies are
reported and discussed within each of these identi-
ed themes.
Caregiver involvement
A caregiver is dened as the person responsi-
ble for providing care to the child on a daily
basis, which includes biological caregivers, legal
guardians, or family members.31 Caregivers are
widely accepted to make the greatest difference to
children’s achievements.32 Thus, they are crucial to
the success of early hearing detection and interven-
tion initiatives.33
Five studies on caregiver involvement were in-
cluded in this review. These studies sought to ex-
plore the inuence of emotional and motivational
characteristics on caregiver involvement, inuence
of the setting in which EI services were received on
caregiver involvement, behaviors and practices as-
sociated with caregiver involvement, as well as de-
termining effective facilitative language techniques
used by the caregiver. Ingber et al34 investigated
the contribution of maternal characteristics in ex-
plaining Hebrew-speaking mothers’ involvement in
EI for their child who is DHH in Israel. In the
Ingber et al34 study, increased curiosity, motivation,
and perceived social support, as well as decreased
pessimism about a child’s potential, resulted in
increased caregiver involvement in EI. However,
increased anger resulted in decreased caregiver in-
volvement. In another study, Harrison et al35 exam-
ined the inuence of the setting in which EI services
were received on caregiver involvement. Caregivers
of children who are DHH enrolled in EI services
at various centers through the United States partici-
pated in a telephonic interview. Results of the study
indicated that family involvement was signicantly
more likely to occur when services were delivered in
the home.
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
N. P. Maluleke et al. Family-Centered Early Intervention 63
Generally, services that reduce the burdens and
stressors families experience are believed to make
it easier for caregivers to focus on the needs and
care of their child.11 Findings from these 2 studies
have implications for establishing FCEI, especially
in the South African context. Curiosity, motivation,
and anger may be perceived incorrectly by profes-
sionals, given the power dynamic created by South
Africa’s sociopolitical history. Caregivers may expe-
rience discomfort and reluctance seeking informa-
tion from a health care professional from a different
linguistic and cultural background.23 Moreover, dif-
ferent cultural groups have vastly different percep-
tions of the causes of disability and disease, which
inuence their health-seeking behavior.25
Furthermore, providing intervention in the
family’s home has been shown to be an effective
strategy for improving child development and
parenting in vulnerable families.36 In addition, the
home visit may increase the family’s sense of control
and comfort, allowing them to get the most benet
from the service, and allows service providers to
offer a more tailored approach to service delivery,
thus increasing caregiver participation.37 Home
visiting during the perinatal period has also been
shown to be efcacious in improving caregiver and
child health outcomes when delivered by nurses
and community health workers (CHWs) in low-
and middle-income (LAMI) countries such as South
Africa.38 However, African countries, South Africa
included, have the lowest per capita health budgets
and fewest health care professionals globally.39
Thus, feasibility of home visits and collaboration
with CHWs during EHDI services for children who
are DHH requires further exploration. Moreover,
EI professionals must be cognizant of caregivers’
health-seeking behavior, which includes consulting
a traditional healer or spiritual guide with the same
linguistic, cultural, and religious background in
conjunction with biomedical options.40 , 41
The Ingber et al34 study also reported pessimism
about their child’s potential and perceived social
support as having an inuence on caregiver involve-
ment. Similar results may be expected in the South
African context. The current states of the Depart-
ment of Health and the Department of Basic Ed-
ucation do not arouse optimism about the poten-
tial of a child who is DHH or availability of social
support. Approximately 80% of teachers in schools
for the deaf are unable to use sign language, only
a few learners who are DHH are reported to have
progressed beyond grade 12, and only a few schools
have audiology equipment and audiologists.42 Some
estimates indicate that more than 90% of all adults
who are DHH have no jobs; the few adults who
enter the open labor market do so in nonprofes-
sional jobs such as ofce administration, upholstery,
cosmetology, construction, and hospitality.43 Fur-
thermore, the shortage of health care professionals
in this context has resulted in most communities
not having the services of audiologists in the pub-
lic sector.15 Consequently, caregivers have to travel
long distances to access such services.
The authors of this article argue that through lin-
guistic and culturally appropriate FCEI, caregivers
and families can be empowered with knowledge
to optimize their child’s developmental outcomes
and be guided to resolve challenges associated with
anger, motivation, pessimism, and perceived sup-
port services. Thus, audiology program’s curricula
for audiologists should incorporate the effects of
ethnicity and culture on clinical decision-making.23
Furthermore, through FCEI, the reported barriers
with access to health care due to a shortage of pro-
fessionals can be minimized.
In the Erbasi et al44 study, conducted in Queens-
land, Australia, ndings revealed that caregiver in-
volvement is multifaceted. Furthermore, it incor-
porates a broad range of behaviors and practices,
which include (a) caregivers’ working behind the
scenes to create an optimal environment for habil-
itation and learning at home and helping the child
adapt to hearing technology as well as managing the
use and maintenance of the devices; (b) caregivers
as case managers, which includes arranging and
attending appointments/meetings, communicating
with various professionals, educating others, and
advocating on behalf of their child; (c) caregivers
supporting their child’s language development by
giving up work or reducing workload so as to help
their child achieve successful communication out-
comes, incorporating interactive activities into daily
routines, and encouraging their child to use com-
munication strategies; (d) caregivers’ role extends
to advocacy for all children who are DHH through
contributing to education and support for other
families with children with hearing loss, as well as
participating in research to improve products and
services; (f) parenting, which includes showing af-
fection and being responsive to their child’s needs,
involving their child in daily and weekly routines,
encouraging and supporting their child to explore
new things, as well as participating in school activ-
ities and helping with school work.
This study is one of a few that seeks to understand
caregiver involvement from their own perspective.
The reported ndings highlight the fact that the con-
struct of caregiver involvement is more extensive
than previously reported and provide a more com-
prehensive understanding of the various roles that
caregivers of children who are DHH fulll in their
children’s daily lives. However, caution needs to be
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64 Family and Community Health January–March 2021 ■Volu me 44 ■Number 1
exercised in the South African context in order to
ensure that epistemic knowledge of developed con-
texts is not used as the norm, without incorporating
knowledge obtained from the experiences of South
African families.15 This raises implications for ex-
ploring constructs of caregiver involvement within
this context to ensure that caregivers are adequately
capacitated within this context to inuence their
child’s development.
In the Cruz et al45 study, the researchers evaluated
the effects of facilitative language techniques and
word types on oral language development over 3
years post–cochlear implantation for children who
are DHH. Higher-level facilitation techniques such
as parallel talk, open-ended questions, expansion,
expatiation, and recast were more facilitative than
lower-level facilitative techniques such as linguis-
tic mapping, commenting, imitation, labeling, di-
rectives, and closed-ended questions. Similarly, the
Ambrose et al46 study conducted in the United
States examined quantity and quality of caregivers’
talk directed to children who are DHH as compared
with children with typical hearing at 18 months and
3 years of age. Caregivers exposed children who
are DHH to greater proportions of directing utter-
ances than to children with typical hearing at 18
months of age. Furthermore, children who are DHH
were exposed to fewer words and lower-quality in-
put from their caregivers than children with typical
hearing at 3 years or age. Findings from these stud-
ies highlight that the quality of caregiver involve-
ment during caregiver-child interactions plays a ma-
jor role on language development for the child who
is DHH.47,48 FCEI programs highlight the impor-
tant role that families and caregivers play in facil-
itating language development in children who are
DHH.3,4 Thus, this raises implications for ensuring
that during caregiver coaching and/or information
sharing, emphasis is placed on the need for care-
givers’ linguistic input to be varied with utterances
that are appropriate and facilitate their child’s lan-
guage development.
Caregiver coaching/information sharing
Information sharing refers to the exchange of in-
formation in an open, objective, and unbiased
manner.7Caregivers should be guided and coached
through information that supports their ability
and condence to care for their child and pro-
vide learning opportunities that have a positive im-
pact on their development without threatening self-
condence, as well as cultural, religious, or familiar
traditions.8,11,49
Twelve studies addressing caregiver coaching
and/or information sharing were included in this
review. Further analysis led the authors of this
article to divide this theme according to the follow-
ing subthemes: caregiver coaching (n =3; 25%);
information provided to caregivers (n =5; 42%);
and information needs of caregivers (n =4; 33%).
Caregiver coaching
The role of the EI practitioner as a “coach” to
support families of children with disabilities is a
critical practice of FCEI, allowing more opportu-
nities to foster the child’s development through
family-implemented activities during their daily
routines.50,51 The 3 studies that addressed care-
giver coaching provided commentary for caregivers
during intervention tasks, as well as feedback on
caregiver-child interaction. The Ekberg et al52 study
demonstrated how caregiver-directed commentaries
during therapy appointments conducted by the pro-
fessional can be used to enhance caregivers’ knowl-
edge of habilitation procedures and facilitate FCEI
in Australia. In their study, Ekberg et al52 re-
vealed that when EI professionals provide caregiver-
directed commentaries during child-directed activi-
ties in therapy, caregivers’ knowledge of habilitation
procedures and goals was enhanced. Furthermore,
the EI professional-caregiver interaction cultivates
a positive partnership with the caregiver.
In the Sacks et al53 study, caregiver education
and linguistic feedback or review of video-recorded
caregiver-child interactions resulted in increased
Adult Word Count, Conversation turn Count, and
Child vocalization Count postintervention scores.
Similarly, the Lam-Cassettari et al54 study demon-
strated increased parental sensitivity, parental struc-
turing, parental nonhostility, parental self-esteem,
child responsiveness, and child involvement follow-
ing video-feedback intervention for caregiver-child
interaction during free play. The Sacks et al53 and
Lam-Cassettari et al54 studies were conducted in
Chicago and in the United Kingdom, respectively.
Caregiver coaching has been shown to empower
and prepare caregivers to function effectively in
their social contexts and daily life and as a re-
sult promote their quality of life.8Caregiver coach-
ing through modeling and provision of linguistic
feedback is essential to ensure that caregivers are
adequately equipped to extend the therapy environ-
ment into the home environment. However, stud-
ies conducted in the South African context have
demonstrated poor caregiver recall and understand-
ing of information provided by professionals. Fur-
thermore, studies highlighted a lack of tailoring
of information giving toward the communicative
needs of the individual caregivers.27 Moreover, the
use of an interpreter has been shown not to neces-
sarily address the challenges associated with multi-
lingualism and multiculturalism.23 The authors of
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
N. P. Maluleke et al. Family-Centered Early Intervention 65
this article argue that a multipronged approach is
required to address this challenge as follows: (a)
the Department of Health should invest in recruit-
ing trained interpreters to assist health care pro-
fessionals; (b) induction of all newly appointed
health care professionals should include introduc-
tory knowledge on the language and culture of the
community that they serve15;(c) additional oppor-
tunities for clarication through the initiation of
support group structures55;and(d) transformation
of the admission criteria to increase accessibility to
African language–speaking students and a curricu-
lum that incorporates cultural awareness and cul-
tural competence.15
Information provided to caregivers
Of the 12 studies that focused on caregiver coach-
ing and/or information sharing, 5 studies investi-
gated information provided to caregivers follow-
ing a failed hearing screening or conrmation of
hearing loss. In the Elpers et al56 study, conducted
in rural Kentucky, caregivers reported poor com-
munication of the hearing screening results. The
hearing screening results were reportedly commu-
nicated to caregivers a few days or weeks after dis-
charge from the hospital via telephone or posted
mail. In the Larsen et al33 study, conducted in Utah
only 48% of the caregivers reportedly received re-
sources pertaining to childhood hearing loss, and
33% were informed about available caregiver sup-
port organizations. Only one study’s ndings re-
ported information provided to caregivers that was
aligned with principles of FCEI. Results in Decker
and Valloton’s57 study conducted in Michigan re-
vealed that the information that caregivers received
was partially in line with recommended practices.
Caregivers were reportedly informed about the fol-
lowing: (a) the importance of talking frequently
throughout the day in everyday routines and activ-
ities; (b) promoting listening skills and language by
focusing on sound; (c) incorporating other commu-
nication channels; and (d) the essential role of care-
givers in EI.
In the Jackson58 and Findlen et al59 studies, care-
givers across the United States reported that they
found the following resources most useful during
information sharing: (a) written materials; (b)ver-
bal/visual demonstrations; (c) hearing aid resources;
(d) discussion with other caregivers of children who
are DHH; (e) Internet sources; (f) explanations pro-
vided by professionals; (g) parent-friendly books;
(h) discussion with adults who are DHH; (i) videos
and DVDs; (j) brochures and pamphlets; and (k)de-
tailed professional books.
The information provided to caregivers is es-
sential in order to ensure caregivers’ involve-
ment in the intervention process. Information shar-
ing dispels misconceptions and emotional turmoil
associated with a conrmed hearing loss. This in-
formation enables caregivers to make informed de-
cisions jointly with professionals.7,60 Therefore, EI
professionals need to decide what information is
essential to include in feedback sessions, as both
the type and amount of information presented may
impact caregiver recall.27 The degree of accurate
recall and understanding of information has sig-
nicant implications for follow-up of treatment
options, as well as commitment and adherence to
treatment recommendations.61,62 Thus, studies in-
vestigating caregivers’ preferred mode of informa-
tion sharing is vital, especially in low literacy pop-
ulations such as South Africa, where only 28% of
a group of 20 to 24-year-olds have a grade 12
qualication.63
Information needs of caregivers
Four of the 11 articles investigated the information
needs of caregivers. In the Jackson et al,64 Jackson,58
Decker and Valloton,57 and Alyami et al65 stud-
ies, caregivers reported the following information
needs: (a) general information about hearing loss;
(b) information relating to children’s development
and community services; (c) available technology;
(d) specialized education for children who are
DHH; and (e) accessing funding for services and
support. Furthermore, the following support needs
were highlighted: support to use signs or sign
language;57 professionals to explain the diagnosis
to siblings, other children, friends, etc;65 connect-
ing with caregivers of children who are DHH;58,64
caregivers using a specic modality; other children
who are DHH; workshops; services provided in nat-
ural environments; service coordination;56 and ad-
ditional support for family life.64
Understanding caregiver information needs is es-
sential to ensure that the information provided
aligns with caregiver needs. The method and com-
municative style in which information is presented
also inuence caregiver recall and understanding.66
Consequently, information sharing should be a
more reective practice, characterized by exibility
and adaptability,27 ensuring that information is pre-
sented effectively and appropriately.
The reported need for professionals to explain the
hearing loss to siblings, other children, and friends
by caregivers in Saudi Arabia, in the Alyami et al65
study, has signicant implications in clinical prac-
tice for developing contexts. This nding illustrates
poor levels of caregiver knowledge associated with
hearing loss.67 Thus, there is much scope for broad-
ening the health education given to mothers dur-
ing antenatal care, especially to include awareness
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
66 Family and Community Health January–March 2021 ■Volu me 44 ■Number 1
of developmental milestones, as well as infant hear-
ing loss and its impact on speech and language
development.68
Caregiver satisfaction
Four articles that investigated caregiver satisfac-
tion with FCEI programs were included in the
review. Caregivers expressed general satisfaction
with FCEI programs. In Ingber and Dromi’s2study,
caregivers expressed satisfaction with professionals’
attitude and practices toward family participation
in the intervention program. The caregivers re-
ported that professionals were willing to collabo-
rate with them and encouraged them to partici-
pate in their child’s intervention. Similarly, in the
Jackson et al64 study, caregivers reported improved
family interaction, parenting, and support following
FCEI. However, caregivers reported decreased satis-
faction with associated expenses of their child who
is DHH and affordability thereof, inclusion within
their community, support to relieve stress, and hav-
ing time to pursue their interest.
In another study on caregiver satisfaction, Alyami
et al65 reported that all the caregivers who partici-
pated in the study expressed satisfaction with the
EI program, with 75% of the caregivers reporting
that the FCEI program helped them learn auditory
training and language activities to use with their
child at home. In the Findlen et al59 study, 86% of
the caregivers reported overall satisfaction with ser-
vices provided during annual multidisciplinary as-
sessment and monitoring appointments.
Caregivers’ self-reported levels of satisfaction ac-
knowledge their actual experience with FCEI pro-
grams and make them the most suitable informants
to improve accountability of actual screening, diag-
nosis, and intervention practice.69 Accordingly, in-
vestigation of caregiver satisfaction with current EI
initiatives in South Africa is warranted so as to iden-
tify gaps and incongruence in knowledge, beliefs,
and practices that will ensure that FCEI programs
that are implemented take into consideration the
linguistic, cultural, and socioeconomic diversity of
South Africa’s population.
Challenges
The benets of FCEI also include greater sat-
isfaction of families with the service received.8
Caregivers who experience services that are more
family-centered reportedly have higher levels of sat-
isfaction with care.70 However, various challenges
have been reported as having been experienced with
the process of FCEI in various contexts by some of
the studies reviewed.
Eleven studies addressing challenges associated
with FCEI were included in this review. Further
analysis led the authors of this article to divide this
theme according to the following subthemes: logis-
tical challenges (n =5; 45%); professional-related
challenges (n =3; 27%); and caregiver-related chal-
lenges (n =3; 27%).
Logistical challenges
Five studies focused on logistical challenges asso-
ciated with the provision of FCEI. In the Adedeji
et al71 and Merugumala et al72 studies, the late iden-
tication, diagnosis, and initiation of EI services for
children who are DHH reported in these studies
were attributed to a lack of attention to early hear-
ing detection in Nigeria and India, respectively, thus,
making EI elusive. Furthermore, in the Merugumala
et al72 study, delayed initiation of EI services was
due to a lack of free public services and caregivers
could not afford the costs at available private health
care facilities.
Similar ndings have been reported in the South
African context as discussed in the introduction sec-
tion earlier. The lack of attention to early hearing
detection in LAMI countries such as South Africa,
India, and Nigeria raises implications for system-
atic planning and implementation of international-
level gold standard EHDI programs at various lev-
els of service delivery. Comprehensive EHDI pro-
gram implementation is characterized by 3 stages;
rst, hearing loss must be identied through hear-
ing screening services. Second, the hearing loss must
be conrmed, described, and categorized. Finally,
intervention services must be provided.73 Thus, ur-
gent implementation of widespread and accessible
EI services would serve as a concrete step to equal-
ize opportunities to optimize long-term vocational
and social outcomes for children who are DHH.74
In the Elpers et al,56 Larsen et al,33 and Khoza-
Shangase75 studies, caregivers reported challenges
associated with a large number of appointments
that their child had to attend. Furthermore, care-
givers reported having to endure evaluations that
required 2 to 3 different appointments to be com-
pleted in 2 or 3 locations. In addition, caregivers re-
ported long waiting lists and delayed appointment
availability as a challenge. Another signicant chal-
lenge expressed by caregivers was difculty with
traveling to areas of health care and having to travel
with extended family members, especially when
there is no consistent mode of transport.56,72 ,75
Poor access to the necessary hearing health care
services is not unique to LAMI countries, as in the
Merugumala et al72 and Khoza-Shangase75 studies.
Penetration of hearing health care services and up-
take of intervention remain low even in high income
countries,76,77 as evidenced in the Elpers et al56
and Larsen et al33 studies. Thus, decentralization
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
N. P. Maluleke et al. Family-Centered Early Intervention 67
of access to hearing health care services and al-
ternative models of service delivery must be ex-
plored. Telehealth provides signicant promise in
improving health care access, quality of service de-
livery, as well as the effectiveness and efciency,76
especially in the South African context, where
4.4 million children travel more than 30 minutes
to reach a health care professional.78 However, fur-
ther research in this area is warranted to ensure that
such services are comparable with face-to-face ser-
vice provision, offer greater affordability of audio-
logical services, and improve the reach of audiolog-
ical services to underserved communities.76,77
Challenges related to professionals
Of the 10 studies that focused on challenges asso-
ciated with FCEI, 3 studies highlighted challenges
related to professionals. In the Elpers et al56 study,
caregivers reported that pediatricians or health care
providers did not expedite the hearing health care
and ignored their concerns about their infant’s hear-
ing loss and that the pediatrician was unaware of EI
programs offered, which resulted in the child not re-
ceiving timely treatment. In the Merugumala et al72
study, caregivers reported that they had been re-
ferred for a hearing evaluation from a general chil-
dren’s clinic but had to “wander around looking for
the right people.” Moreover, in Khoza-Shangase’s75
study, 48% of the caregivers reported that the pro-
fessional did not seem to know or understand their
child’s hearing issue.
The authors of this article argue that for FCEI
initiatives to be effective and efcient, services must
be easily accessible to the clients whom they aim to
serve. Health care professionals’ lack of knowledge
pertaining to pediatric hearing loss highlights the
need for EHDI programs to be mandated in South
African and other LAMI countries. This will facili-
tate support and education of all health care profes-
sionals involved in pediatric care.79 Thus, potential
prospects exist for effective transdisciplinary team-
work by ensuring sufcient awareness of childhood
hearing loss by health care professionals involved in
pediatric management.68
Challenges associated with caregivers
Two of the 10 studies highlighted challenges asso-
ciated with caregivers. In the Elpers et al56 study,
50% of the caregivers reported a lack of knowledge
of treatment options for hearing loss. Similarly in
Khoza-Shangase’s75 study, caregivers reported poor
awareness and knowledge of hearing loss and the
suitable services that were available. Authors of this
article argue that maternal awareness of infant and
childhood hearing loss may prompt earlier suspi-
cion of the hearing loss, and subsequent EI, espe-
cially in cases of delayed-onset hearing loss that can-
not be detected via UNHS programs. This can be
achieved by broadening the health education given
to mothers during antenatal care and at immuniza-
tion clinics, as discussed earlier.68
In the Merugumala et al72 study, 35% of the
caregivers reported that traditional wisdom from
elders played a crucial role in health-related
decision-making in their families. Consequently, the
mother-in-law, who had the powerful role of de-
cision making, reportedly underestimated the seri-
ousness of the hearing loss and dismissed caregiver
concerns, resulting in delayed conrmation of the
hearing loss and subsequent intervention. There are
3 social structures that reportedly inuence access
to health care in the South African context. These
include economic inequalities, male partner control,
and social norms around gender.80
These social structures render women limited
power to acquire health information, make deci-
sions regarding health, and take action to improve
health.80 Furthermore, reports from similar sub-
Saharan countries suggest that decisions regarding
access to health services are often made by their
spouse or a senior member of the family such as
the mother-in-law, father-in-law, or grandmother.81
These decision-making dynamics were reported in
research pertaining to access to maternal health care
and power imbalances within sexual relationships
and healthy behavior around HIV/AIDS. However,
the authors of this article argue that these prin-
ciples apply to access to health care services for
women and children irrespective of the ailment.
Therefore, we maintain that health care profes-
sionals need to be cognizant of the complexity of
contextual decision-making dynamics and explore
ways of navigating this dynamic in clinical practice.
Telehea l t h
According to the World Health Organization,82
telehealth is the delivery of health care services by
health care professionals through the use of in-
formation and communication technologies, where
distance is a critical factor. Telehealth is viewed as
a solution to the shortage of EI providers and chal-
lenges with providing services to geographically dis-
persed families.83 Three studies that investigated
telehealth were included in this review. Cole et al84
conducted a survey to investigate service coordi-
nators and EI providers’ perceptions of telehealth
and use of telehealth services within EI systems
in Colorado. Only 20% of EI providers reported
that the children who are DHH on their caseload
received services via telehealth, whereas 97% of
service coordinators reported that less than 25%
of these children on their caseload received services
Copyright © 2020 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
68 Family and Community Health January–March 2021 ■Volu me 44 ■Number 1
via telehealth. Participants also identied strengths
and barriers of telehealth services. Participants iden-
tied exibility, access to providers from rural ar-
eas, and heightened family engagement through the
use of coaching practices as strengths of telehealth,
whereas use of Internet technology and videoconfer-
encing platforms as well as negative attitude toward
the use of telehealth were identied as barriers.
Behl et al85 compared the outcomes of teleprac-
tice to traditional in-person services for children,
families, and EI providers in Part C EI programs
across the United States. Results demonstrated (a)
statistically signicant difference in favor of the
telepractice group compared with the in-person
group for norm-referenced, standardized language
test scores; (b) No statistically signicant differences
between groups with regard to family outcomes;
however, in-person home visits resulted in higher
scores for provider responsiveness and parents’
engagement; and (c) The number of visits and
minutes of intervention were higher for teleprac-
tice with fewer cancellations due to weather or
transportation.
Constanescu86 investigated caregiver satisfaction
for remote delivery of EI services via computer-
based videoconferencing (telehealth) in Brisbane,
Australia. All the caregivers expressed satisfaction
with the service, with 89% reporting that receiving
EI services via videoconferencing was a better alter-
native to traveling for regular face-to-face sessions.
However, 61% of the caregivers reported experienc-
ing technical difculties that required troubleshoot-
ing during the session.
There has been an increase in Internet access over
the past decade, making the use of telehealth a
more viable and cost-effective service delivery op-
tion for EI.87,88 Furthermore, telehealth promotes
and enhances caregiver involvement through family
coaching.89 However, it is crucial that its feasibil-
ity is investigated with regard to cost-effectiveness;
installation, use, and maintenance of videoconfer-
encing devices; as well as the associated technical
support required. Moreover, access within the South
African economically unequal society needs careful
deliberation.
CONCLUSION
Various aspects of FCEI have been reported in the
review. Findings of the review revealed that for qual-
ity FCEI services, EI services should (a) take due
consideration of the family’s linguistic, religious,
and cultural background, social context, as well as
constructs of caregiver involvement and need for
home visits; (b) carefully explore aspects of FCEI
programs such as caregiver involvement, informa-
tion and support needs, and caregiver satisfaction
with current EI services; (c) explore caregiver sat-
isfaction with current EI to identify gaps and in-
congruence in knowledge, beliefs, and practices in
order to ensure quality FCEI programs; (d) miti-
gate contextual-specic challenges associated with
EI services in order to ensure widespread and ac-
cessible services; (e) explore use of telehealth as
an alternative and feasible service provision avenue
that mitigates the reported barriers associated with
access to health care—to ensure contextually rele-
vant and responsive care of children who are DHH.
These considerations provide a springboard for the
implementation and evaluation of FCEI programs,
especially in the South African context. Current
ndings have signicant value for the formulation
of a framework for FCEI for children who are DHH
in South Africa, as they identify and describe current
practice models and/or processes of FCEI for these
children that the current authors can incorporate in
this process.
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