Family-centered Early Intervention Research Articles

Part C Early Intervention Procedural Safeguard Notices: Are They Supporting Parents to Understand Their Rights?

A family-centered early intervention (EI) approach mandated by the Individuals with Disabilities Education Act (IDEA) Part C, means involving parents fully in EI and ensuring they know their legal rights and responsibilities for participating. However, many parents report difficulty accessing information and decision-making in EI. IDEA mandates all jurisdictions provide parents with a procedural safeguard notice (PSN) outlining parents’ rights and advocacy processes. Yet, it is unclear to what extent PSNs are accessible, particularly to parents with marginalized identities. This study analyzed PSNs from 56 Part C jurisdictions for the components required by law, understandability to the general public, and availability in multiple languages. The PSNs generally did not include all required information, necessitated grade-levels above high school, minimally attended to plain language, and were infrequently available in non-English languages, suggesting that many parents are prevented from information about EI. PSNs, therefore, are a source of bias in Part C.

Barriers Perceived by Professionals in Family-Centered Early Intervention Services: A Systematic Review of the Current Evidence

AbstractFamily-centered services are the recommended early intervention approach to develop and deliver services for children with disabilities and their families. This systematic review aims to identify and highlight what barriers service providers in family-centered early intervention perceive that prevent them from providing high-quality services focused on the family and the child's overall well-being. We identified 37 articles that met the selection criteria of the first initial search of 1858 articles. These studies provided insights from both service providers and families. The identified barriers were categorized into eight dimensions: family, child, knowledge, and application of the approach/model, professional beliefs, natural environment, service coordination, working conditions, and current legislation. The main barriers identified were family barriers, insecurities perceived by professionals and difficulties in their ability to provide services, changes in their attitudes and behaviors when they perceive that they are losing their role as experts, lack of knowledge and application of specific practices, and lack of skills needed to engage primary caregivers in natural settings. These findings should inform policy implementation at local and state levels in countries where family-centered service is established in early childhood programs.

Caregiver involvement in support services for a child with hearing loss?

Family-centered practices are considered one of the crucial components of services offered to children with hearing loss in early intervention. These practices aim to empower caregivers to support the language development in children with hearing loss through family-centered early intervention. In Turkey, early intervention practices are commonly provided under the supporting services provided by Private Special Education and Rehabilitation Centers (PSERCs). However, there is limited information regarding the ways of involving caregivers in the support service process and about the content shared to empower them. This research was designed as a holistic single case study based on a qualitative approach to examine how caregiver involvement is achieved in support services in PSERC for pre-school children with hearing loss in Turkey. Data obtained through observations, semi-structured interviews, documents (Audiogram, activity items, etc.), and researcher diaries were analyzed inductively. Results demonstrate that a range of practices, such as informational notes, quarterly meetings, and debriefings are implemented at the focal PSERC. However, it found that the only practice that was consistently followed was debriefings. Although the content shared in the debriefings was seemingly supportive for the language skills of children with hearing loss, the information caregivers needed was diverse. The results clearly demonstrate that current attempts to involve caregivers at PSERCs lack family-centered practices. A more comprehensive approach is required to improve services at PSERCs and make them truly family-centered. Further research is crucial to this end.

Early Childhood Development Is Not Enough: In Defense of Children with Developmental Delays and Disabilities and Their Right to Family-Centered Early Childhood Intervention (In the Global South).

The international recognition of the critical importance of the early childhood phase has been firmly established through decades of rigorous research, evidence-based practices, and undeniable evidence of the returns on investment made during this formative period. Consequently, early childhood development has emerged as a top priority on both national and international agendas. This momentum reached a pinnacle in 2015 with the unanimous adoption of the 17 Sustainable Development Goals (SDGs) by the United Nations, which placed a particular emphasis on children under the age of five within the education-focused SDG 4, notably target 4.2, centered on ensuring that all girls and boys are ready for primary education through the provision of accessible "quality early childhood development, care and pre-primary education". However, the Global South reflects the glaring omission of addressing the needs of children at risk of poor development due to disabilities. This paper underscores the imperative for specialized early childhood intervention tailored to young children with disabilities and their families, commencing as early as possible following birth. It advocates for Early Childhood Intervention (ECI) as a service distinct from general Early Childhood Development (ECD), emphasizing the crucial role of families as active partners from the outset. Furthermore, the paper strengthens the case for Family-Centered Early Childhood Intervention (Fc-ECI) through the integration of evidence-based practices and an in-depth description of one such program in South Africa with specific reference to deaf and hard-of-hearing infants and their families. This model will be guided by core concepts outlined in WHO and UNICEF Early Childhood Intervention frameworks. Through this exploration, the paper aims to shed light on the urgent need for inclusive approaches to early childhood development, particularly for children with disabilities, and to advocate for the adoption of Family-Centered Early Childhood Intervention as a cornerstone of global efforts to ensure the holistic well-being and development of all children.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Support Principles.

This article is the sixth in a series of eight articles that comprise a special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. The Support Principles article is the second of three articles that describe the 10 Principles of FCEI-DHH, preceded by the Foundation Principles, and followed by the Structure Principles, all in this special issue. The Support Principles are composed of four Principles (Principles 3, 4, 5, and 6) that highlight (a) the importance of a variety of supports for families raising children who are DHH; (b) the need to attend to and ensure the well-being of all children who are DHH; (c) the necessity of building the language and communication abilities of children who are DHH and their family members; and (d) the importance of considering the family's strengths, needs, and values in decision-making.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Call to Action.

This Call to Action is the eighth and final article in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. Collectively, these articles highlight evidence-informed actions to enhance family well-being and to optimize developmental outcomes among children who are DHH. This Call to Action outlines actionable steps to advance FCEI-DHH supports provided to children who are DHH and their families. It also urges specific actions to strengthen FCEI-DHH programs/services and systems across the globe, whether newly emerging or long-established. Internationally, supports for children who are DHH are often siloed, provided within various independent sectors such as health/medicine, education, early childhood, and social and disability services. With this Call to Action, we urge invested parties from across relevant sectors to join together to implement and improve FCEI-DHH programs/services and systems, build the capacity of early intervention (EI) Providers and other professionals, extend research regarding FCEI-DHH, and fund EI supports, systems, and research, all with the aim of advancing outcomes for families and their children who are DHH.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Foundation Principles.

This article is the fifth in a series of eight articles that comprise a special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. The 10 FCEI-DHH Principles are organized conceptually into three sections (a) Foundation Principles, (b) Support Principles, and (c) Structure Principles. Collectively, they describe the essential Principles that guide FCEI for children who are DHH and their families. This article describes the Foundation Principles (Principles 1 and Principle 2). The Foundation Principles emphasize the essential elements of ensuring that families with children who are DHH can access early intervention (EI) and other appropriate supports, as well as highlight the need for provision of EI that is family-centered. Implementation of these FCEI-DHH Principles is intended to improve the lives and the outcomes of children who are DHH and their families around the globe.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Guiding Values.

This article is the second of eight articles in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, or FCEI-DHH. Five foundational values that guide FCEI-DHH are described, providing an evidence-informed, conceptual context for the 10 FCEI-DHH Principles and other articles presented in this issue. These values are applicable for Early Intervention (EI) Providers and other professionals on FCEI teams, as well as for FCEI-DHH programs/services and systems. The five key values include (1) being family-centered, (2) responding to diversity, (3) involving invested parties, especially families and individuals who are DHH, (4) supporting holistic child development, and (5) ensuring fundamental human rights. These evidence-informed values are considered essential to the effective provision of FCEI-DHH supports.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Introduction.

This article is the first of eight articles in this special issue on Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH), or FCEI-DHH. In 2013, a diverse panel of experts published an international consensus statement on evidence-based Principles guiding FCEI-DHH. Those original Principles have been revised through a coproduction process involving multidisciplinary collaborators and an international consensus panel, utilizing the best available evidence and current understanding of how to optimally support children who are DHH and their families. This revision (referred to as expanded Principles) was motivated by the need to incorporate (a) input from family leaders and DHH leaders, (b) broader international and cultural perspectives, (c) new empirical evidence, and (d) research in human development. This Introduction provides an overview of the rationale, purposes, and main content areas to be addressed throughout the special issue.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Methods.

This is the fourth article in a series of eight that comprise a special issue on family-centered early intervention (FCEI) for children who are deaf or hard of hearing (DHH) and their families, FCEI-DHH. This article describes the co-production team and the consensus review method used to direct the creation of the 10 Principles described in this special issue. Co-production is increasingly being used to produce evidence that is useful, usable, and used. A draft set of 10 Principles for FCEI-DHH and associated Tables of recommended behaviors were developed using the knowledge creation process. Principles were refined through two rounds of eDelphi review. Results for each round were analyzed using measures of overall group agreement and measures that indicated the extent to which the group members agreed with each other. After Round 2, with strong agreement and low to moderate variation in extent of agreement, consensus was obtained for the 10 Principles for FCEI-DHH presented in this special issue. This work can be used to enhance evolution of FCEI-DHH program/services and systems world-wide and adds to knowledge in improvement science.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Preface and Acknowledgements.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Preface and Acknowledgements.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Structure Principles.

This article is the seventh in a series of eight articles that comprise a special issue on family-centered early intervention for children who are deaf or hard of hearing and their families, or FCEI-DHH. This article, Structure Principles, is the third of three articles (preceded by Foundation Principles and Support Principles) that describe the 10 FCEI-DHH Principles. The Structure Principles include 4 Principles (Principle 7, Principle 8, Principle 9, and Principle 10) that highlight (a) the importance of trained and effective Early Intervention (EI) Providers, (b) the need for FCEI-DHH teams to work collaboratively to support families, (c) the considerations for tracking children's progress through developmental assessment, and (d) the essential role of progress monitoring to continuously improve systems.

Family-Centered Early Intervention Deaf/Hard of Hearing (FCEI-DHH): Cultural & Global Implications.

This article is the third in a series of eight articles that comprise this special issue on family-centered early intervention for children who are deaf or hard of hearing and their families (FCEI-DHH). It highlights the origins of FCEI-DHH in Western contexts and well-resourced locations and emphasizes the role of culture(s) in shaping FCEI-DHH. This article also cautions against the direct application of the 10 FCEI-DHH Principles presented in this issue across the globe without consideration of cultural implications. Cultural perceptions of decision-making processes and persons who can be decision-makers in FCEI-DHH are explored. Deaf culture(s) and the benefits of exposure to DHH adults with diverse backgrounds are introduced. Structural inequities that impact families' access to FCEI-DHH programs/services and systems, within and among nations and regions, are noted. The need to consider the cultural influences on families is emphasized; this applies to all levels of FCEI, including the development of systems through implementation of supports.

Infant 2 School: A structured health promotion programme for community nursery nurses

Infant 2 School (I2S) is a new, individualised family-centred early intervention, and health and development promotion programme that is designed to be delivered by community nursery nurses (CNN) from within health visiting teams. The programme aims to address identified service gaps by supporting and complimenting the work that health visitors do so that vulnerable families needing additional help have access to evidence-based interventions in a timely manner. I2S was recently launched in the UK and this paper provides an overview of the programme including its origin, structure, content, benefits and anticipated outcomes for children and families.

Early mathematical performance of deaf and hard of hearing toddlers in family-centred early intervention programmes

ABSTRACT Research indicates that establishing a strong foundation in early mathematics is essential for later academic learning. Previous research with students who are deaf or hard of hearing (DHH) has shown varying differences in the performance and achievement when compared to typically hearing (TH) students. While the majority of research in this area has been conducted in the United States, studies in other countries suggest that these differences may be global. The present study investigated the early mathematics abilities of 3-year-old DHH children enrolled in family-centred early intervention in the Netherlands. Fifty-three DHH and TH children were given an adapted version of the Early Mathematics Performance Diagnostic. Results showed that on average, the DHH and the TH children performed similarly on all domains, except for Measurement. Likewise, both groups showed similar mathematical knowledge in most early mathematics tasks measuring sub-concepts such as counting objects, shape matching, or measuring weight. Differences were identified in some basic tasks measuring the sub-concepts (e.g. rote counting, measuring time, solving puzzles), however, not on the more advanced tasks measuring these same sub-concepts. These findings are important for parents, teachers, and early interventionists.

Mothers of deaf children undergoing early development support in terms of parenting competences

The paradigm of family-centered early childhood intervention indicates that the family and professionals are in a symmetrical relationship and share responsibility for taking appropriate measures to provide the child and his/her family with adequate support based on the family's needs and resources. The aim of the study was to identify the level of parental competences (translated as parents' dispositions conditioning their use of such ways of dealing with the child that fosters its development - shaping the child's autonomy and self-regulation skills and sense of efficacy) of parents of children undergoing early intervention, in this case, children with hearing impairment. The study covered 52 randomly chosen mothers. Parental Competence Test by Anna Matczak and Aleksandra Jaworowska was used to measure outcome results.

Comparison of Participants' Behaviors During Telepractice and In-Person Family-Centered Early Intervention

Family-centered early intervention (FCEI) is characterized by the collaborative relationships that exist within triads of practitioners, caregivers, and young children whereby practitioners use capacity-building practices to foster caregivers' involvement in supporting their children's early development. Traditionally, FCEI has been provided in-person with practitioners and families physically present in the same location but, for children who are deaf or hard of hearing, access to in-person early intervention is often limited by external factors. To address these challenges, practitioners are using telepractice more frequently to connect with families through synchronous, 2-way videoconferencing. This exploratory study examined whether participants' behaviors differed when FCEI was delivered in-person and through telepractice. The Triadic Intervention and Evaluation Rating Scale (TIERS) was used to compare 2 groups of triads (16 in-person and 12 telepractice) in terms of practitioner behaviors, caregiver behaviors, and the reciprocal influences of those behaviors. Results indicated that practitioners in telepractice used most family-centered practices more frequently than practitioners in-person. Correspondingly, caregivers in telepractice had more opportunities to participate in early intervention and more frequently demonstrated a variety of participation behaviors than caregivers in-person. Although further research is required to confirm these exploratory findings, these results suggest that FCEI provided through telepractice may enhance practitioners' use of family-centered practices, which, in turn, supports greater participation by caregivers.

Predictors of Early Language Outcomes in Children with Connexin 26 Hearing Loss across Three Countries.

GJB2-associated hearing loss (GJB2-HL) is the most common genetic cause of hearing loss in children. However, little is known about the clinical characteristics and early language outcomes in population-oriented samples including children with different degrees of hearing loss. Insight into these characteristics are relevant for the counselling of parents. Our sample consisted of 66 children at approximately 2 years of age (17–32 months) with bilateral hearing loss due to GJB2 from three population-based cohorts in Austria, Australia and the Netherlands. Predictors of early vocabulary, including demographic, audiological, genetic and intervention variables and the role of medical comorbidities and nonverbal cognition were examined. The vocabulary scores of children with GJB2-HL were approximately 0.7 standard deviations (SDs) below the norms of children with typical hearing. Age at access to family-centered early intervention and first-born position among siblings predicted language outcomes, whereas the degree of hearing loss and genetic subtype were not significantly correlated with expressive vocabulary. In children with GJB2-HL, early access to family-centered early intervention significantly affected language outcomes at the age of two.

Effects of Enhanced Milieu Teaching and Book Reading on the Target Word Approximations of Young Children With Language Delay

Teaching vocabularies to young children is critical as vocabulary is related to long-term language, literacy, and academic skills. The current study used a multiple probe design to examine the effects of enhanced milieu teaching with book reading on the use of word approximations in four 2- to 4-year-old females with language delay. The first author implemented the intervention in families’ homes for 3 to 5 days a week over 3 months. Through visual analysis and the calculation of effect sizes, the results showed that there was a functional relation between the intervention and the number and frequency of targeted word approximations. After six to 25 intervention sessions, participants used all five targeted word approximations, and the improvements were maintained up to 15 weeks. In addition, the total frequency of targeted word approximations used after prompts and the proportions of prompts used to elicit the targeted word approximations were measured and analyzed. Parents reported high social validity of the intervention via an anonymous questionnaire. Implications for practice and research of family-centered early intervention are discussed.

Diversity of Child and Family Characteristics of Children with Hearing Loss in Family-Centered Early Intervention in The Netherlands.

Background: Family-centered early intervention (FCEI) for children with hearing loss (HL) supports caregivers to promote their children’s language development. To provide FCEI services that are relevant and accessible to meet diverse needs, insight into the characteristics of children with HL is important. In the current study, various characteristics of children with HL and intervention-related factors are examined in relation to spoken language outcomes. Methods: Child and family characteristics, language outcomes and data on intervention were extracted from FCEI records for 83 children. Family involvement ratings were obtained from EI providers. Relations between characteristics, intervention, family involvement and language outcomes were analyzed and predictors for children’s language outcomes were investigated. Results: The characteristics of children with HL in FCEI are very diverse. Family involvement and the occurrence of additional disabilities were predictive for children’s receptive and expressive language abilities; the start of FCEI was not. Maternal education was predictive for expressive language outcomes only. Conclusions: The current study showed the diversity in characteristics of children with HL and their families in the degree of HL, etiology, cultural background, home language, family involvement and additional disabilities. We conclude that ’one size does not fit all’, and FCEI programs should acknowledge the unique strengths and challenges of every individual family.