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

Abstract

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.

The Foundation Principles of Family-Centered Early Intervention (FCEI) for children who are deaf or hard of hearing (DHH) highlight fundamental concepts upon which FCEI-DHH is built. The abbreviation, DHH, used throughout the Principles, is intended to be inclusive of all children who are deaf or hard of hearing, including children who are DHH with disabilities.

Principle 1 Early intervention following identification: Early, timely, and equitable provision of supports

Early identification that an infant or child is DHH should be linked to provision of early, timely, and equitable access to supports and interventions as soon as possible in the child’s life.

In the sections that follow, concepts are defined, and evidence is reviewed to support three critical aspects of providing early intervention following identification of a child who is DHH. These include the need to serve children and families as early as possible in the child’s life, in a timely manner following identification, and through equitable provision of supports.

Early

Infants’ earliest experiences in life are known to be foundational to development (Center on the Developing Child at Harvard University, 2021). The goals of preventing delayed access to language and communication, along with the potential to maximize early stimulation opportunities for children who are DHH, have been drivers in the implementation of newborn hearing screening in many nations throughout the world. Newborn hearing screening often leads to the provision of FCEI-DHH early in life. The World Health Organization (WHO, 2020) guidelines for supporting early childhood development establish the importance of early supports and interventions to address any existing concerns that may impact a child’s development. The WHO, through its Call to Action in the World Report on Hearing (WHO, 2021), has advocated for global implementation of newborn hearing screening. Furthermore, WHO recommendations for maternal and newborn postnatal care endorse the need for universal newborn hearing screening (WHO, 2022). The World Report on Hearing (WHO, 2021) also states that after an infant or child is identified as DHH, it is essential to provide early intervention as early as possible and consider the communication needs and preferences of the family, as well as available resources.¹

Implementation of FCEI-DHH should commence as early as possible following the child’s identification, and before the full description of the child’s audiological profile (i.e., infant is confirmed as DHH, although exact hearing levels and their configuration are not yet determined). Quantification of an infant’s hearing levels may require a series of appointments, and this information is important. Yet, full description of the audiological profile can require substantial time and could result in a delay in provision of appropriate supports for the child and family. Continuous audiological assessments and expertise can be provided while the family begins receiving FCEI-DHH. Following confirmation that a child is DHH, FCEI-DHH should begin and continue to ensure that the family is well supported.

Supports are provided early in life to ensure children’s healthy development in language, cognition, and social–emotional domains. Children require a steady “diet” of language exposure to prevent the consequences of insufficient language access on linguistic, cognitive, and social–emotional development (Cunningham et al., 2023; Rautakoski et al., 2021; Zauche et al., 2016). Limited language exposure is sometimes referred to in the literature as “language deprivation” (see Hall et al., 2017). The authors of this special issue elect to use the term “insufficient language access” in reference to the developmental context of newborns and infants (Szarkowski, 2018). One of the intentions of FCEI-DHH is to prevent insufficient language access; indeed, studies demonstrate that children who receive interventions early have better language outcomes compared with those who receive interventions later in development ([Holzinger et al., 2020; National Early Childhood Technical Assistance Center [NECTAC], 2011; Pimperton et al., 2016; Shekari et al., 2017; Yoshinaga-Itano et al., 2017, 2018]). FCEI-DHH also begins early to provide families support in adjusting to their child’s identification as DHH and to guide them in nurturing the child’s development from the start (see Moeller & Szarkowski et al., 2024, Guiding Values, this issue).

Timely

Screening, confirmation, and enrollment in services should be prompt, with effective links from identification of the child’s hearing levels to FCEI. The Joint Committee on Infant Hearing (JCIH, 2019) defines specific benchmarks (i.e., the “1–3–6 plan,” emphasizing hearing screening by 1 month of age, diagnostic audiologic assessment by 3 months, and enrollment in EI no later than 6 months). Evidence suggests a positive impact on language and literacy outcomes when such benchmarks are followed (Pimperton et al., 2016; Yoshinaga-Itano et al., 2017, 2018, 2021). The JCIH (2019) suggests the use of earlier benchmarks for programs and systems that have met the 1–3–6 timelines. These earlier benchmarks, “1–2–3,” promote screening by 1 month of age, audiological confirmation by 2 months, and provision of early intervention before 3 months of age. Emerging evidence supports this accelerated timeline (Walker et al., 2022). These recommended timelines in infancy are not achievable currently in many countries where early identification programs are lacking, emerging, or require implementation in alternative, contextually relevant ways (Sass-Lehrer & Young, 2016; Störbeck & Young, 2016). In such circumstances, programs should aspire toward serving children and families “as early as possible” following identification.

Some FCEI-DHH systems advocate for a timeline that uses five benchmarks: 1–3–6–6–9. The revised benchmarks add connecting with family-to-family supports by 6 months and engaging with support from adults who are DHH by 9 months of age, recognizing the value of early family-to-family (Behl et al., 2016; Henderson et al., 2014; Hu, 2016; Jackson, 2011; Jackson et al., 2010; Poon & Zaidman-Zait, 2014; Ward et al., 2019) and family-to-DHH adult connections (Cawthon et al., 2016; Hamilton & Clark, 2020; Hintermair, 2008; Hoskin et al., 2022; Jackson, 2011). For additional description of these benefits and references to support the inclusion of family-to-family and family-to-DHH adult connections, see Moeller & Szarkowski et al., 2024, Guiding Values and Szarkowski & Moeller et al., 2024, Support Principles, this issue. Some families find these particularly useful in supporting adjustment to child’s identification and gaining a sense of what it may mean to experience life as an individual who is DHH in their cultural context. The extended timeline intends to provide families with needed supports and services.

Early intervention programming should strive to provide streamlined processes and make it easy for families to access all the supports provided through FCEI-DHH. Ideally, access to supports can be facilitated by providing a single point of entry to programs for children who are DHH, as long as that point of entry is staffed by persons knowledgeable about the needs and programs for DHH. In many contexts, a single point of entry is not possible; yet coordination of supports can be enormously helpful to families by reducing the challenges of navigating multiple systems. Well-trained EI Providers need to be involved in the transition from early identification to intervention practices to promote consistent implementation and to bolster family support (Nickbakht et al., 2021; see Szarkowski et al., 2024, Structure Principles, this issue, for information on EI Provider competencies). Effective and responsive transitions are essential because some families need encouragement to participate in early intervention supports. Families often need support during these early transitions to work through various emotional responses, including potentially distressing feelings, in response to the infant’s identification as DHH (Young & Tattersall, 2007).

Equitable provision of supports

Equity happens when barriers are removed and when all members of a society have the same opportunities. If all individuals in a society—regardless of their race/ethnicity, class, gender, language, religion, disability, or other differences—are able to achieve the same outcomes, this would reflect equity (National Association for the Education of Young Children, 2019). Equity goes beyond “equality” and acknowledges the varying types and levels of support necessary based on individual or familial needs and abilities (Equality and Human Rights Commission, 2018). In services for young children, equity involves not just access but quality of what is provided. Equity is defined as the assurance that the “greatest possible opportunities for quality early childhood programs are available for all children and families” (Britto et al., 2011, p.4.). The goal of equitable access and quality is challenging in the context of FCEI-DHH. There are barriers and disparities (including systemic racism) in access to services and supports that impact equity for families (for further discussion on this topic, see Szarkowski & Moeller et al., 2024, Cultural & Global Implications, this issue). Equity also means that all service options should be available to families, not just those favored by policy makers. There are particular challenges in some contexts that have limited resources (Opoku et al., 2020), and even in well-resourced nations, barriers and disparities continue to exist (Kingsbury et al., 2022). To enhance equity, FCEI-DHH programs/services and systems should proactively establish mechanisms to limit the impact of challenges resulting from program limitations, family circumstances (e.g., financial constraints, low literacy levels, compromised mental health), geographical location, and socioeconomic/sociopolitical national context (Lai et al., 2014). Equity requires (a) awareness of inequities that exist at the EI Provider, program/service, and systems levels, (b) efforts to coordinate supports across systems to increase access, and (c) advocacy work to expand the types of supports provided for families.

One essential element of equity includes providing flexibility in the provision of FCEI-DHH for families. Family-centered supports are often provided in the home during the birth-to-3-year period, bolstering families’ ability to participate consistently (Harrison et al., 2016). However, holding intervention sessions in the home is not an option or preference for some families. Some families prefer receiving supports in other locations such as education, child, or health care centers or in community settings.

Yet not all families have access to home-based or center-based supports. Some families may face challenges in accessing supports for a variety of reasons (e.g., transportation or distance). When access is lacking, alternate routes to accessing FCEI may be useful. Telepractice (also called telehealth or teleintervention) is one example of a delivery mode that may expand access to supports for some families (Cole et al., 2019; JCIH, 2019; McCarthy, 2020; McCarthy et al., 2019, 2021). In telepractice, professionals and families are connected synchronously through technology despite being physically distant (McCarthy, 2020). Some research supports the effectiveness of telepractice for providing FCEI (Behl et al., 2017; Chen & Liu, 2017; Cole et al., 2019; Daczewitz et al., 2020; McCarthy, 2020; McCarthy et al., 2019, 2021). McCarthy and colleagues (2019) conducted a scoping review that included 23 papers investigating the use of telepractice in providing FCEI-DHH. They concluded that telepractice can be a viable approach for providing early intervention. More research is needed to substantiate the viability of telepractice for the delivery of FCEI-DHH (McCarthy et al., 2019) and to guide global implementation (Maluleke et al., 2021).

Although telepractice may be an effective tool, the application of telepractice is limited in some contexts by the lack of family access to the internet or necessary technology tools. Other culturally congruent approaches need to be considered in such instances. For example, FCEI-DHH programs could prioritize training EI Providers from within the families’ community and provide access to FCEI-DHH sessions in a range of locations if the home is not preferred (e.g., maternal–child health centers, community centers, places of worship) that are near the family and are comfortable for families to access (Störbeck & Young, 2016).

Regardless of how FCEI-DHH is implemented, the type and amount of support offered by FCEI-DHH programs/services and systems will vary, informed by the development of child and family capabilities, as well as the families’ strengths, assets, values, concerns, and needs. Addressing equity involves more than considerations of where FCEI-DHH supports are offered (home-based, center-based, telepractice, etc.) but also the nature and quality of the supports and the relationships between EI Providers and families.

Table 1

Recommendations for early intervention following identification, including the early, timely, and equitable provision of FCEI-DHH supports (Principle 1).

Principle 1 Early intervention following identification: Early, timely, and equitable provision of supports
EI Provider actions in response to family-identified needs and concerns	Family activities and outcomes that may be experienced when EI Providers are responsive to family needs and concerns
1. Validate and respond to family’s questions and collaborate to create new understandings about their infant’s hearing, what it means to be DHH, and their child’s developmental needs	1. Ask questions and seek information about their infant’s hearing, what it means to be DHH, and their child’s developmental needs
2. Provide accessible information in response to family questions about the importance of early intervention and early access to language and social situations to nurture child development	2. Ask about the value and importance of early intervention and early access to language and social situations to nurture their child’s development
3. In collaboration with the family, identify the families’ values, strengths, opportunities, needs, and challenges to inform provision of FCEI-DHH	3. Identify family values, strengths, opportunities, needs, and challenges through self-reflection; engage in discussion with EI Providers and share these insights
4. Offer access to comprehensive, evidence-informed supports; assist families in considering their early intervention options (see Szarkowski & Moeller et al., 2024, Support Principles, this issue); respect family’s rights and culture when explaining specific supports	4. Engage with FCEI-DHH in a timely manner after identification (as soon as possible, ideally by 6 months of age, if identified by that time); gain understanding of the evidence-informed supports offered to the family
5. Invite families to connect with other families, family-to-family supports, and provide information about the benefits of these connections	5. Consider opportunities for and benefits of engaging with family-to-family supports (e.g., to support adjustment to having a child who is DHH; see Principle 3, Szarkowski & Moeller, et al., 2024, Support Principles, this issue)
6. Invite families to connect with DHH adult-to-family supports that include opportunities to meet a variety of trained DHH adults and professionals with varying hearing levels and lived experiences; provide information about benefits of DHH adult supports; provide access to information that builds understanding about what it means to be DHH	6. Consider opportunities for and benefits of engaging with DHH adult-to-family supports in a timely and culturally appropriate manner (e.g., to support adjustment to having a child who is DHH and to understand what it means for their child and their family; see Szarkowski & Moeller et al., 2024, Support Principles, this issue)
7. Encourage families to share FCEI-DHH information with other family members, as desired; provide guidance about how to inform others, if the family wishes to do so	7. Share information with other family members about what is learned from FCEI-DHH and its implications for the family
8. Partner with the family to understand and reduce changeable barriers to accessing services	8. Identify possible barriers to engaging with FCEI supports and partner with EI Providers to minimize or eliminate changeable barriers
Program/service and system processes
Implement evidence-informed benchmarks for follow-up after identification of a child as DHH to ensure that supports are offered in as timely a manner as possible
Create and share accessible information with families including an overview of the program/service and system to promote their active engagement
Create and maintain up-to-date, neutral, accurate, and comprehensive resources to support families in their exploration of early intervention resources and opportunities
Create mechanisms for families to access FCEI-DHH as soon as possible after a child is identified as DHH (whether identified early or identified later than the newborn period)
Assist families in navigating from identification of hearing levels to engagement with FCEI-DHH
Provide access to coordinated supports where possible to assist families in managing multiple appointments with EI Providers if needed
Create and implement FCEI-DHH processes to address challenges to follow-up, encourage family engagement, and increase access to services and supports; address barriers to FCEI-DHH to mitigate to the degree possible the influences of a family’s socioeconomic status, income, nationality, religion, language, disability status, race/ethnicity, and/or culture
Support families in understanding information to facilitate timely follow-up
Adjust the types of interventions based on families’ unique values and culture(s), as well as family-identified needs and family-identified strengths; provide supports in environments or settings that are accessible to the family (e.g., providing telepractice opportunities, flexibly scheduling appointments)
Create opportunities for ongoing professional development for EI Providers to support families with initiating FCEI-DHH (e.g., helping to navigate appointments and follow-up, referring for/providing additional supports, and introducing family-to-family as well as family-to-DHH adult contacts)
Create programmatic opportunities for family-led family-to-family support networks and DHH adult-led DHH adult-to-family support networks as part of the FCEI-DHH system
Create and analyze processes at the system level, where appropriate, to track children who are “lost to follow-up” (e.g., are not receiving FCEI-DHH supports following identification), using data for system improvement

In each of the Tables of recommended behaviors for the 10 FCEI-DHH Principles, where family activities or outcomes emphasize engaging in services, it is essential to respect that families have the right to participate in ways that are most comfortable for them and to accept or decline what is offered. Family activities and outcomes listed in the right-hand column are not intended as a “test” of family skills, but rather a description of the abilities and outcomes that may result when EI Providers are effectively supporting families through FCEI-DHH. Across all of the Principles, recommended actions have been identified that are “aspirational” in some nations and contexts. They may require development of infrastructure, securing of resources, and/or progressive implementation. However, even if actions in the Table are aspirational, progress toward their implementation and/or adaptation is encouraged to meet the needs of families of children who are DHH and the aims of FCEI-DHH.

Recommendations for Principle 1

Table 1 provides recommendations regarding the early, timely, and equitable provision of supports following identification that a child is DHH. The three sections include recommendations for (a) EI Provider actions, (b) Family activities and outcomes, and (c) Programs/services and systems processes. Recommendations for EI Providers and families are strategically placed side-by-side to convey the collaborative nature of the process. The intention is to reflect the inherent reciprocity in the relationship and mutual influences on what happens in FCEI-DHH. This side-by-side (with EI Providers in the left column) arrangement is not meant to convey that EI Providers are prescribing or directing the family activities and outcomes. Rather, it is intended to convey the “give and take” that happens in effective family–EI Provider relationships (Dunst & Espe-Sherwindt, 2016; Moeller & Mixan, 2016). The majority of the time, the EI Provider is responding to family-identified concerns and needs; that is, the family requests information or support and the EI Provider responds. In addition, in no way are the recommended activities and outcomes intended as a “test” of family abilities. Rather, they are stated as a guide for what the family may experience from the responsiveness of the EI Provider and/or through their own discoveries. There is both “an art and a science” to FCEI-DHH—the “art” involves sensitivity and responsiveness to family needs on the part of the EI Provider, whereas the “science” involves utilizing evidence-informed practices. At times, families may not know what to ask or what is needed. In such instances, the “art” involves EI Provider attunement to unidentified topics and seeking to collaborate in exploring those areas. Each pair of items needs to be considered “as a set” to avoid the impression that the professional is directing the intervention.

Principle 2 Family–EI Provider relationships: Partnerships, engagement, capacity-building, and reflection

Family-EI Provider partnerships serve as supportive contexts for fostering the self-efficacy and capacity of families to nurture their child. They also enhance EI Providers’ understanding and ability to effectively support families. In FCEI-DHH models, EI Providers seek to establish effective collaborations/partnerships with families, with both contributing knowledge and expertise to the process.

In the following sections, concepts regarding relationship formation in FCEI-DHH are described and supported by evidence. Concepts discussed include collaborative partnerships, the engagement of families in FCEI-DHH, capacity building, and the value of reflection to guide aspects of intervention.

Partnerships

FCEI-DHH strives for effective partnerships between families and EI Providers, in which both are engaged in the process, offer insights, and gain knowledge from each other. EI Providers also honor family decisions about the degree to which they desire to “partner.” Recognition of assets that both families and EI Providers possess can enhance the relationship-building aspect of FCEI, as well as contribute to improved family and child outcomes (Akhbari Ziegler & Hadders-Algra, 2020). Family–EI Provider partnerships benefit from the development of a working alliance. As an example, the family brings to the alliance knowledge about what works best to calm the child; the EI Provider supports the family by suggesting ways to model for the child ``emotion words'' that fit the situation. Central to this working alliance are mutual trust and respect, cooperative rapport, and clear communication (Trute & Hiebert-Murphy, 2013). Both families and EI Providers benefit from relational practices (respect, empathy, active listening) and participatory practices (family engagement, informed decision-making, incorporation of family needs and priorities; An et al., 2016, 2019; Dunst, 2017). In FCEI-DHH, both the relational and participatory aspects are valued and recognized as contributing to family–EI Provider partnerships (Moeller & Mixan, 2016; Sass-Lehrer et al., 2016).

Partnerships between families and the professionals with whom they work may take a variety of forms. Initially, families may be unfamiliar with how collaborative partnerships work, and over time may become increasingly confident in their ability to engage collaboratively. Effective partnership formation relies on the relationship-building skills of EI Providers, including their beliefs that families have much to offer, their openness and willingness to gain knowledge from families, and their positive attitudes toward developing partnership with families (Dalmau et al., 2017). Partnership formation can require EI Providers’ humility and willingness to let go of an “expert” dominant stance (Vilaseca et al., 2019). Instead, EI Providers adopt a collaborative stance, bringing their considerable expertise to the relationship, while simultaneously and intentionally avoiding dominating exchanges and working to ensure that there is a reciprocal dynamic with families. There is a delicate give-and-take, with both the EI Provider and family providing expertise (see Moeller & Szarkowski et al., 2024, Guiding Values, this issue).

Partnerships are flexible, and the balance of power will shift depending upon the situation and the family’s desires, needs, and abilities. For example, in cases where families’ decisions may negatively impact the child’s development, the expertise of the professional is needed to assist families in becoming aware of the impact of choices made that affect the child.

Despite evidence of the efficacy and effectiveness of family-centered approaches, gaps remain in the implementation of family-centered approaches. For example, there is a persistence of professionally driven approaches in some contexts, lack of professionals trained in family-centered models, and challenges in adjusting interventions to meet the diverse needs of families, among other examples (McCarthy & Guerin, 2022; Su et al., 2021; and see Szarkowski & Moeller et al., 2024, Cultural & Global Implications, this issue; Moeller & Szarkowski et al., 2024, Guiding Values, this issue). Professionals require training in partnership formation and skills in maintaining partnerships with families (Dalmau et al., 2017; Vilaseca et al., 2019).

Engagement

In FCEI-DHH models, family involvement is strongly valued and families may choose to be more or less engaged in a family–EI Provider partnership. King and colleagues (2014) define the engagement of a family as a multifaceted, motivational state of committing to or investing in the intervention process. The involvement and engagement of families naturally varies across time, depending on a variety of circumstances and as needs arise or change. Through active listening and meaningful conversations, all partners support the engagement process.

Individual members of the family (e.g., mothers, fathers, siblings, grandparents, and other family members) are likely to engage differently with FCEI-DHH. EI Providers engage with family members in different ways depending upon how and to what extent they would like to be involved. Determination of who is involved in the decision-making process, as well as who will receive FCEI-DHH support, will vary depending upon the wishes of the family, the context, and the family’s culture(s) (see Szarkowski & Moeller et al., 2024, Cultural & Global Implications, this issue, for information about cultural influences on decision-making). Furthermore, in cultural contexts in which engaging with professionals is not consistent with cultural norms, relationships between the family and EI Providers may take different forms (Maluleke et al., 2021; Rosenzweig & Voss, 2022).

An understanding of the culturally informed perspectives on FCEI requires cultural competence and humility on the part of EI Providers (Bowen, 2016; McMillin & Carbone, 2020). In recent years, there has been concern that the term “cultural competence” reflects learning with an endpoint (full competence) and that such learning could contribute to categorizing and stereotyping. Greene-Moton and Minkler (2020) argue that the concepts of cultural competence and humility are complementary and together capture needed abilities of professionals. Greene-Moton captures this well in describing the two concepts:

Table 2

Recommendations for family–EI Provider relationships, including focus on partnerships, engagement, capacity building, and reflection (Principle 2).

Principle 2 Family–EI Provider relationships: Partnerships, engagement, capacity building and reflection
EI Provider actions in response to family-identified needs and concerns	Family activities and outcomes that may be experienced when EI Providers are responsive to family needs and concerns
1. Guide families in ways that support their active engagement in FCEI-DHH supports/programs; collaborate with others to build family capacity to engage and actively work to reduce or remove changeable barriers to family engagement	1. Gain knowledge about the importance of family engagement in FCEI and share information with EI Providers and access help from others as needed to address circumstances that impede family members’ ability to engage with FCEI supports/programs
2. Gain knowledge and skills to support formation and maintenance of partnerships with families, including cultural humility and letting go of the role as “expert”	2. Gain knowledge about the goals, purposes, and benefits of working in partnership with EI Providers and other professionals who may partner with the FCEI-DHH team; actively and collaboratively engage with professionals as partners
3. Gain knowledge and skills to enhance relational practices in working with families including demonstrating active listening, compassion, empathy, and respect	3. Share information with EI Providers about the family’s goals, values, strengths, and needs as desired
4. Collaborate with families to develop and sustain partnerships over time that reflect equality; contribute to shared knowledge and expertise	4. Engage with EI Providers in partnership formation and maintenance over time; contribute to shared knowledge and expertise
5. Engage with families in shared planning, goal setting, ongoing observations, and assessment of needs; flexibly revise goals as needed	5. Engage with EI Providers in shared planning, goal setting, ongoing observations, and assessment of needs; flexibly revise goals as needed
6. Enable the family to build their own capacity by offering information, modeling, practicing, and reviewing skills to encourage child development; support family capacity by focusing on family–child interactions, embedded naturally in daily routines, that reflect the language/culture(s)/context of the family	6. Reflect and rely on existing knowledge and skills while gaining new knowledge and skills in promoting child development through family–child interactions embedded naturally in daily routines
7. Guide the family in understanding information specific to being DHH and its implications for their child and their parenting; assist the family in recognizing the needs of the child with the needs of the family as a whole	7. Use existing knowledge and skills while gaining new knowledge and skills specific to parenting their child who is DHH; gain the ability to address the needs of their child and family
8. Provide families with information about a range of community partners and supports, including DHH adult-to-family and family-to-family connections	8. Engage with community partners, including DHH adult-to-family and family-to-family connections, as well as family-identified community supports (e.g., religious/spiritual groups, other community groups)
9. Reflect together with the family on the services/supports provided and the effectiveness of the partnership; use this reflection to guide changes in partnership roles and programming as needed	9. Reflect with the EI Provider on the services/supports received through FCEI-DHH and the partnership between the family and EI Provider(s); share these insights with the FCEI-DHH team to inform changes as needed
10. Engage in critical self-reflection to identify gaps in personal and professional knowledge; take action to reduce these gaps	10. Be empowered to ask questions about the intervention process and be confident in requesting changes
11. Gain knowledge and skills to accommodate the variability among families and to respect the family as they are through culturally competent and responsive practices	11. Be empowered to openly share information about one’s family, values, culture(s), and language(s) to guide the EI Provider in using responsive practices
12. When direct language/cultural matches are not possible, respond to the language and communication needs of the family by (a) facilitating access to information needed by the family; (b) providing FCEI supports in the language(s) used by the family, when possible; (b) ensuring that materials and resources are translated and made available to families in their preferred language(s); (c) offering visual resources for families with low literacy levels; and (d) including interpreters and/or cultural brokers as needed	12. Work with EI Providers to identify situations where well-trained interpreters and/or translation of materials (into the appropriate language[s] used by the family), including resources that can be accessed visually, auditorily, and through print, as needed
Program/service and system processes
Develop or maintain models of service delivery that support the value of partnership relationships between families and EI Providers
Establish and/or maintain networks that link various services and supports to enable families to engage in FCEI-DHH
Develop and maintain policies to flexibly accommodate the unique needs of various families and support the ability of both EI Providers and families to minimize challenges to service access (including attitudinal and systemic barriers such as prejudice, discrimination, and oppression)
Implement programming protocols that recognize/consider that families’ ability to engage in FCEI-DHH can be influenced by circumstances such as parenting stress, grief, marital stress, socioeconomic status, poverty, conflict/war, or other factors; bring needed family supports to address such circumstances
Use tools for EI Providers to self-monitor relationship-based competencies for supporting family engagement in intervention
Provide training/mentoring and continuing education for EI Providers and families regarding the nature of effective partnerships and joint roles in implementing capacity-building efforts (see Szarkowski et al., 2024, Structure Principles, this issue)
Maintain caseloads (i.e., number of families served by individual providers) that enable EI Providers the critical time/space to establish and maintain positive family–EI Provider partnerships, while maintaining appropriate professional boundaries
Develop and maintain mechanisms for families to provide feedback on the effectiveness of partnerships
Develop and maintain mechanisms for management of conflict that may arise in the family–EI Provider relationship, between or among professionals or other providers serving families, or in other aspects of FCEI-DHH supports
Provide training for EI Providers about the importance of critical self-reflection in their own professional work and related training in cultural humility and competence (see Szarkowski et al., 2024, Structure Principles, this issue)
Provide opportunities for families in FCEI-DHH to share their reflections on their experiences with and contributions toward the FCEI-DHH process
Incorporate professionals/leaders who are DHH in systems and programs to provide guidance to professionals and families about partnership, engagement, and capacity building
Incorporate family leaders in systems and programs to provide guidance to families about partnership, engagement, and capacity building
Collaborate systematically with family-led and DHH-led communities and organizations

In any of the following family outcomes or behaviors that involve engaging in services, it is essential to respect that families have the right to participate in ways that are most comfortable for them and to accept or decline what is offered. Family activities and outcomes listed in the right-hand column are not intended as a “test” of family skills, but rather a description of the abilities and outcomes that may result when EI Providers are effectively supporting families through FCEI-DHH. Even if actions in the Table are aspirational, progress toward their implementation and/or adaptation is encouraged to meet the needs of families of children who are DHH and the aims of FCEI-DHH.

I accept cultural humility to be the ability to maintain an interpersonal stance that is other-oriented (or open to others) while accepting cultural competence as the ability to interact effectively with people of different cultures – more of a learned/taught condition. I pride myself on being able to claim both – competence and humility – recognizing both as a lifelong journey without an endpoint. I believe cultural humility is a spiritual attribute, drawing from the ability to be humble and couched in a state of selflessness, while cultural competence hinges on a deliberate engagement in cultural knowledge transfer (p. 3).

Capacity-building

FCEI-DHH models strive to bolster the family’s confidence and ability to help the child flourish and thrive, supporting capacity-building and strengthening the family’s competencies (Dunst, 2017; Dunst et al., 2019). Through capacity-building, families gain parental self-efficacy (a sense of knowing what to do and confidence in doing it), which supports achievement of desired child and family outcomes (Dirks & Szarkowski, 2022; Sukkar et al., 2017; Trivette et al., 2010). Capacity building is a strengths-based approach (Keilty et al., 2022). EI Providers seek to strengthen families’ existing abilities and support the development of new understandings and abilities (Dunst et al., 2019). Families also gain knowledge to guide their parenting of a child who is DHH and inform their parent–child interactions (Davids et al., 2018; Glanemann et al., 2013; Keilty et al., 2022). Incorporation of repeated, authentic, “real-life” opportunities for gaining knowledge and skills can assist families in naturally implementing strategies because they are embedded in meaningful, daily routines (e.g., feeding, dressing, bathing routines, experiencing outings in the community, etc.; Adolfsson et al., 2013; Keilty et al., 2022; McWilliam, 2010).

Families enrolled in FCEI-DHH have identified the need for knowledge and support specific to a child’s being DHH and the impact on development, including the impact of multiple disabilities (Friedman Narr & Kemmery, 2015). As families work to increase knowledge and capacity, they seek information that is as unbiased as possible, and desire information about access to a variety of resources (Porter et al., 2018; Stewart et al., 2021). Although many professionals in the field advocate for provision of “unbiased” information, it is challenging for humans to be fully “unbiased” and therefore, the terms “neutral, balanced, accurate, comprehensive and as free from bias as possible” are used (see Szarkowski & Moeller et al., 2024, Support Principles, this issue, for further discussion of the complexities around being “unbiased”). Capacity-building approaches often include family–EI Provider collaboration to enhance family–child interactions (King & Xu, 2019; Lam-Cassettari et al., 2015; Mirus & Napoli, 2018), balancing the needs of the child who is DHH with the needs of siblings/other family members, and encouraging and supporting the family’s ability to advocate for themselves and their children. In capacity-building models, EI Providers are accepting of families and accommodate the variability among families and family members.

Foundations of family support include being strengths-based, individualized, collaborative, and context-driven (Noll et al., 2021). Notably, across the globe, different terminology is preferred to describe the process of families’ gaining knowledge and skills with the support of professionals. Some academic work has described “parent training” as focusing on child development, whereas “parent coaching” is focusing on both the child and the family (Akhbari Ziegler & Hadders-Algra, 2020). Other terms utilized are teaching, sharing, and modeling, although some of these terms are considered less desirable in some cultural contexts.² Whether EI Providers are described as coaches, facilitators, consultants, or something else, they are often in the role of collaborating with families to support nurturing caregiver–child interactions and other family goal-related outcomes (Noll et al., 2021; Ward et al., 2020).

Reflection

Reflection is the process of considering the experiences, thoughts, and feelings directly connected to the FCEI-DHH partnership. Reflection can be beneficial to families and EI Providers alike. Insights from reflection can inform and guide what is happening within the family–EI Provider partnership. Consider the following scenario:

A skilled EI Provider in the U.S. was working with a Native American woman and her toddler in their first session. The EI Provider had little information about the family, although a previous professional had described this mother as a “poor informant.” The EI Provider reflected on that statement and questioned her own possible biases about Native American families, or those residing on a reservation. Her initial approach was to create a trusting environment and watch the mother interact with her child so that she could learn from them. The EI Provider mentioned positive aspects of the mother–child interaction and asked the mother to comment on whether the son’s behavior on this day was typical for him. This responsive approach led to the mother sharing many helpful insights and exploring the impact of her son’s behaviors on family dynamics. The mother was a skilled informant when the context was comfortable and trusting. Reflection on the part of both the mother and the EI Provider following the session brought to light insights about how the two of them could work together comfortably.

As in this example, the reflection process is also essential as a part of providing culturally responsive FCEI-DHH (see Szarkowski & Moeller et al., 2024, Cultural & Global Implications, this issue). Reflections on the part of both family members and EI Providers can also be utilized to promote change in the interventions/supports to optimally benefit the child and family and lead to positive outcomes (Dunst & Espe-Sherwindt, 2016).

Recommendations for Principle 2

Table 2 provides recommendations regarding family–EI Provider relationships, including the tools of partnership, engagement, capacity building, and reflection. Guidance is provided in the three sections for (a) EI Provider actions, (b) Family activities and outcomes, and (c) Programs/services and systems processes. As noted in the description of Table 1, the placement of the EI Provider actions in the left column with family activities and outcomes in the right is intended to convey collaboration and reciprocity in the relationship, not professionally led intervention.

FCEI-DHH resources: Foundation Principles

The resources in Table 3 are examples of helpful websites and other online materials that support the application of the FCEI-DHH Principles. The resources include a range of options that reflect the myriad demographics and global perspectives of the FCEI-DHH international community. The resources are intended to be used as a starting point and may be adapted or used alongside materials currently available. Readers are encouraged to identify the resources that best fit their local context.

Table 3

FCEI-DHH resources that are relevant to implementation of the Foundation Principles.

Foundation resources	Description of resource and internet link
Alexander Graham Bell Association	International organization for families with children who are deaf or hard of hearing. This resource includes information for families about hearing assessments, hearing devices, communication options, and other topics with an emphasis on listening and spoken language. Link: https://www.agbell.org/Families/Communication-Options
Australasian Newborn Hearing Screening Committee	Australasian resource that provides information to families about newborn hearing screening including a range of resources including printable resources. Link: https://www.newbornhearingscreening.com.au/parents/
European Charter of Parents’ Rights	European document providing advice to families about setting expectations for their children and their engagement in FCEI-DHH programs. Link: https://fepeda.eu/european-charter-of-parents-rights/
First Signs Website	New Zealand resource that provides advice and information about using New Zealand sign language with an infant or toddler. This site provides advice about using sign language that is applicable to other sign languages. Link: https://firstsigns.co.nz/nzsl-with-your-little-one/
Hands and Voices	North American resource to support family expectations for their children and their engagement in FCEI-DHH programs. This site provides links to many resources for families of newly identified children who are DHH. One particularly useful resource on this site is: “8 Reasons to say YES to Early Intervention for your child who is Deaf/Hard of Hearing (D/HH).” There is also a section on family-professional collaboration. Link: https://www.handsandvoices.org/resources/jcih-parent-guide.html Link: https://www.handsandvoices.org/articles/articles_index.html#parpro
HI Hopes	South African resource for families who have young children who are deaf or hard of hearing and professionals. This resource focuses on how hearing is tested and next steps for families. Link: https://www.hihopes.co.za/what-if-hearing-loss-is-suspected/
National Center for Hearing Assessment and Management (NCHAM)	NCHAM is a North American national technical resource. The Center provides resources for families and professionals on various topics related to newborn hearing screening and follow-up. It includes an E-Book on numerous topics. Link: https://www.infanthearing.org/ and https://www.infanthearing.org/ehdi-ebook/

Acknowledgments

The authors are grateful to Bahar Rafinejad-Farahani for her generous contribution of time and expertise in managing and formatting references. We express thanks to Dr. Marilyn Sass-Lehrer, the special issue editor, who guided and enhanced the work through her capable direction and invaluable wisdom. We are grateful for the helpful guidance from the anonymous reviewers whose input strengthened this article. Finally, we appreciate the efforts of our colleagues who supported the authors in gathering resources for FCEI-DHH implementation.

Conflicts of interest

None declared.

Data availability

The information upon which the Foundation Principles is based was gathered through an eDelphi process with a group of international collaborators. This process is described in the Methods paper contained in the special issue (Moodie et al., 2024, Methods).

Footnotes

1

Also see World Federation of the Deaf (WFD) on sign language, see https://wfdeaf.org/our-work/human-rights-of-the-deaf/ for information on advancing the human rights of deaf people.

2

These insights were garnered from members of the International Consensus panel for FCEI-DHH, based on their experiences living and working in different cultural contexts around the globe.

Appendix A

FCEI-DHH International Consensus Panel/Co-production Team

Michele Berke

Doris Binder

Gwen Carr

Natasha Cloete

Jodee Crace

Kathryn Crowe

Frank Dauer

Janet DesGeorges

Evelien Dirks

Johannes Fellinger

Bridget Ferguson

Anita Grover

Johannes Hofer

Sonja Myhre Holten

Daniel Holzinger

Karen Hopkins

Nina Jakhelln Laugen

Diane Lillo-Martin

Lucas Magongwa

Amber Martin

Jolanta McCall

Melissa McCarthy

Teresa McDonnell

Guita Movallali

Daiva Müllegger-Treciokaite

Stephanie B. Olson

Bolajoko O. Olusanya

Paula Pittman

Ann Porter

Jane Russell

Snigdha Sarkar

Leeanne Seaver

Claudine Storbeck

Arlene Stredler-Brown

Nanette Thompson

Sabine Windisch

Christine Yoshinaga-Itano

Alys Young

Xuan Zheng

Author notes

See Supplementary Material