Abstract
Part C Early Intervention is intended to build capacity among caregivers of infants and toddlers with special needs to use tailored strategies in natural environments. Satisfaction and perceived strategy use, however, remain unclear. In a Northeastern home-based program, caregivers (n = 195; 33% response) and providers (n = 66; 33% response) answered questions on strategy use, whether others are asked to use strategies, and perceived compliance. A subset of providers participated in a focus group. Most providers were “somewhat confident” caregivers use recommended strategies. Half of providers consistently encouraged caregivers to ask others to use strategies, with this linked to familiarity with ecological systems theory. Despite 86.2% of caregivers asking one or more person to use strategies, there was little confidence in compliance. Findings and implications are discussed, including revisiting coaching practices, exploring variability in support networks, and promoting strategy use across key partners.
Keywords
In the United States, infants and toddlers with significant delays or disabilities and their families are eligible to receive home- and/or center-based Early Intervention (EI) developmental services under Part C of Individuals with Disabilities Education Act. Roughly 3% of the population, or 357,715 children, received Part C EI services in 2016 (Early Childhood Technical Assistance, 2016; U.S. Department of Education, 2017).
Although there is some state variability (e.g., cost, eligibility for those deemed at risk, standardized measure used to assess eligibility, number of providers who directly work with the family), Part C EI is intended to help caregivers embed tailored, developmentally appropriate strategies within the natural environment (e.g., home, childcare, playground). For example, rather than working on isolated skill-building in a clinic, a child will gain more opportunities to practice and faster acquisition of skills if the EI provider supports the child and caregiver in working on positioning and mobility goals during backyard play and/or climbing stairs in the familiar home setting (e.g., Dunst, Hamby, Trivette, Raab, & Bruder, 2000). Strengths, needs, and preferences are assessed using a family interview, a standardized assessment, and informed clinical opinion across developmental domains (i.e., gross and fine motor, expressive and receptive language, communication, cognition, activities of daily living). Providers then partner with fellow team members (which include the family) to use recommended, evidence-based practices (Division for Early Childhood, 2014) in working toward desired outcomes and short-term functional goals, as specified in each child’s Individualized Family Service Plan. As explained by Jackson (2017), “Early intervention service delivery varies by type, setting, intensity, and duration . . . [o]ften times, the age of entry determines how long children are able to participate in these services” (p. 6). Children may receive services by one or more provider once or twice a week or month until the child ages out at 36 months. Hallmarks of Part C EI include being strength-based, family-centered, and capacity-building (Powell, Batsche, Ferro, Fox, & Dunlap, 1997), with family capacity-building serving as a mediator of the benefits of EI (Dunst & Trivette, 2009). Receiving EI services correlates with positive child and family outcomes (Feldman, 2004; Karoly, Kilburn, & Cannon, 2006; Ramey & Ramey, 1998).
In addition to literature suggesting that increasing hours of EI service may improve communication, socialization, and daily living in young children (Woodman, Demers, Crossman, Warfield, & Hauser-Cram, 2018), empowering caregivers and other key partners is essential given that a large amount of ongoing exposure to recommended strategies and reinforcement of skills occurs between sessions, when providers are not there (Jackson, 2017; Jung, 2003). This process of empowering and building capacity among caregivers primarily occurs via coaching. This refers to an “interactive process of observation and reflection . . . to select and implement meaningful strategies to achieve functional outcomes that focus on the child’s participation in natural settings” (Rush, Shelden, & Hanft, 2003, p. 33). More specifically, coaching is comprised of initiation, observation, action, reflection, and evaluation (see Hanft, Rush, & Shelden, 2004). Readers are encouraged to see Friedman, Woods, and Salisbury (2012) for a detailed description of varying types of coaching strategies EI providers may use (e.g., caregiver practice with feedback, demonstrating, direct teaching, guided practice with feedback, joint interaction). As Friedman et al. (2012) explained, . . . EI providers who collaborate with caregivers will need to consider how to gather information about what the caregiver wants and needs to learn and how he or she can situate that learning in real-world contexts and typical routines in ways that support caregiver learning and the child’s growth and development. (p. 65)
Coaching can bolster consistency in strategy use beyond providers’ weekly or monthly sessions to achieve desired outcomes (Fleming, Sawyer, & Campbell, 2011) and is widely encouraged in the literature (Akamoglu & Dinnebeil, 2017; Mahoney et al., 1999; Rush & Shelden, 2011).
At the same time, it is unclear whether current practices are well received by and/or sufficient for families. Primary caregivers may be dissatisfied with existing support in developing strategies and setting goals (Iversen, Shimmel, Ciacera, & Prabhaker, 2003). Concerted effort may be warranted to empower caregivers to understand recommendations and effectively convey information to other key partners in a child’s life (Hanft & Pilkington, 2000). It is unclear if families understand proper use of strategies, rationales underlying strategy use, the need for consistency across activities and key partners in the child’s life, and/or how to respond to others’ potential skepticism or questions. There is some literature on the need for more recognition of the role of informal supports (e.g., Wodehouse & McGill, 2009) and experiencing social isolation and family tensions (e.g., Hubert, 2011) in mothers of older children with disabilities, but there is a need for such studies pertaining specifically to caregivers of children in Part C EI.
An ecological framework accounts for the bidirectional role of EI personnel and support networks on the family unit (Bronfenbrenner, 2001), with diverse sociocultural backgrounds and experiences influencing interactions (Souto-Manning & Swick, 2006; Vygotsky, 1978). Some scholars have examined families’ complex and influential connections with informal and formal support networks (Baumgartner, Burnett, DiCarlo, & Buchanan, 2012; Correa, Bonilla, & Reyes-MacPherson, 2011). Adequacy of family resources correlates with personal well-being and commitment to child-level interventions (Dunst, Leet, & Trivette, 1988). It is essential to focus more on family outcomes (Bailey et al., 1998), family empowerment (Trivette, Dunst, & Hamby, 2010), and ways of accounting for overlooked nuances in families’ informal and formal support networks (Bronfenbrenner, 2001; Dunst, 2000).
According to Unger and Powell (1980), “[a] factor external to the family which plays a critical role in facilitating adaptation to stress is emotional and material support from formal and informal sources” (p. 566). Quality of social support may predict level of stress when parenting a young child with developmental disabilities (Woodman, 2014). Researchers have also found that social support can help when a caregiver has less severe depressive symptoms (Lee, Halpern, Hertz-Picciotto, Martin, & Suchindran, 2006). Furthermore, particularly given the high number of mothers who work outside the home, there is increasing reliance on babysitters, other relatives, and childcare providers. As noted by Meyers, Rosenbaum, Ruhm, and Waldfogel (2004), “most young children from all income levels now spend a portion of their time in nonparental care” (p. 223). EI programs should promote involvement and consistency in strategy use from all key partners in the child’s everyday natural environment (e.g., Carpenter, 1997). To the best of the author’s knowledge, there is a dearth in analyzing strategies that may effectively bolster families’ social network connections with EI services. In one study, grandparents did not attend therapy sessions but were asked to play a contributing role in implementing therapy strategies for children with hearing loss (McNee & Jackson, 2012). McCormick, Stricklin, Nowak, and Rous (2008) provide a clear description of how to create an eco-map or visual representation of a family’s informal and formal support network. Engaging in such a process with caregivers can promote understanding of the quality or strength of each relationship, the type(s) of support provided (e.g., childcare, friendship/emotional support, financial assistance), and the extent of meaningful exchanges that are occurring across key stakeholders in a child’s early years of development. To optimize exposure to recommended strategies, caregivers may arguably serve as liaisons between EI providers and other key partners in the family’s broader formal and informal support network.
Purpose
To address a dearth in our understanding, this exploratory study aimed to examine primary caregiver and EI provider self-report on perceived use of recommended strategies by caregivers and other key partners (i.e., relatives, childcare workers, babysitters) who actively interact with the child but do not typically attend EI sessions (Hanft & Pilkington, 2000; McWilliam & Scott, 2001). Assessing family and provider perceptions aligns with Schema Theory (Markus, 1977), whereby early internal beliefs inform subsequent beliefs and actions (Dunsmore & Halberstadt, 1997; Dunsmore & Karn, 2001; Renk, Roddenberry, Oliveros, & Sieger, 2007). In other words, pinpointing the extent of anonymous, self-reported willingness to use and/or request that others use recommended EI practices may shed light on what they likely do in practice. Guiding research questions for EI providers and caregivers included the following:
Guiding research questions for EI providers are as follows:
What are providers doing to inform caregivers of recommended practices during scheduled EI sessions? (Survey)
To what extent do providers perceive strategy use among caregivers and engage in discussions about caregiver strategy use beyond the EI session? (Survey and focus group)
What is done to promote awareness of and/or carryover of recommended strategies among members of each support network? (Survey and focus group)
Guiding research questions for primary caregivers are as follows:
To what extent are caregivers satisfied with current service delivery?
To what extent is there perceived support (i.e., emotional support and support for their child receiving EI services) from members of the family’s support network?
To what extent do caregivers report sharing information on and/or asking for carryover in using recommended strategies with others in their network? To what extent is there perceived compliance in using recommended strategies among members of the family’s support network?
Method
Research Approach and Design
A cross-sectional, mixed-methods design was used to collect and analyze self-administered parent and provider survey data and provider focus group data to investigate the aforementioned guiding research questions. More specifically, the three guiding questions for primary caregivers were solely based on self-report in their anonymous survey responses. Survey and focus group data were both used to answer the guiding questions for participating EI providers.
Participants and Sampling
Study setting
The site was a home-based EI program in a primarily urban county (60% low-income) in the Northeastern United States. Services were under a traditional model (i.e., one or more service providers across one or more agencies working directly with each family on varying days).
Recruiting providers
To recruit providers, the author received an email listing of 200 providers (occupational therapists, physical therapists, speech-language pathologists, and special instructors) from multiple small agency representatives or sole proprietors providing EI to families in the county. Each provider on this listing received an alternate consent form (i.e., no signature needed to participate) and link to the electronic survey via Qualtrics, an online system. Sixty-six county EI providers (33% response) participated in completing the provider survey (see survey details above and in Online Appendix A). As noted in Table 1, these providers were 100% female and nearly all reported also being a parent (87.88%). The sample reflected a mix across different disciplines (16.67% occupational therapists, 22.73% physical therapists, 28.79% speech-language pathologists, and 30.30% special instructors). For the purpose of this study, no Service Coordinators (SCs) were invited to participate.
EI Provider Characteristics (n = 66).
Note. “EI” refers to nonclinic, home-based Early Intervention services for infants and toddlers (birth-36 months) with special needs under Part C of the Individuals with Disabilities Education Act (IDEA). Participating EI providers completed an expert-reviewed electronic survey and were invited to participate in a focus group to discuss aggregated findings. EI = Early Intervention.
Following the data analysis, EI providers were invited via email to participate in a focus group led by the study author to reflect and elaborate on aggregated survey findings. Five professionals from the EI program (i.e., two Speech-language pathologists, one occupational therapist, one physical therapist, one supervisor with extensive experience in social work) agreed to participate in a 60-min audio-taped focus group at a central county office location. All participants of this focus group were female and the four providers self-reported that they had also participated in completing the provider survey questions (see more details on this focus group in the “Analysis” section).
Recruiting caregivers
To recruit caregivers, SCs were asked to bring printed copies of the brief family survey to scheduled visits (see Online Appendix B). In an effort to promote more candid responses and minimize potential concerns with social desirability, the University institutional review board (IRB) protocol required that SCs not directly mark or see caregivers’ individual responses; SCs were given explicit directions by the site director to only fold the completed survey and fax or put it in a sealed envelope to send to the site director’s office. The author’s number was listed on the form with text encouraging caregivers to call if preferring to respond via phone, but no caregiver sought this option. The condensed one-page survey was completed by 195 primarily English-speaking caregivers (33% response rate). As noted in Table 2, the majority of surveys were completed by a female caregiver (n = 173; 88.70%), with six grandmothers and 167 mothers (including one foster parent). Forty-one percent of respondents’ enrolled children were 24 months or younger (n = 79), with the majority of respondents’ enrolled children 25 to 36 months of age during data collection (n = 113; 57.95%). Despite this older child age in the sample, however, the large majority of respondents’ children (n = 153; 78.46%) were only enrolled for 1 year or less. A high percentage of respondents’ children were only in their first 6 months of EI service delivery (n = 95; 48.72%). Site permission was not able to be secured to conduct a similar focus group with caregivers (due to concurrent administrative changes).
Primary Caregiver Characteristics (n = 195).
Note. “EI” refers to nonclinic, home-based Early Intervention services for infants and toddlers (birth-36 months) with special needs under Part C of the Individuals with Disabilities Education Act (IDEA). Respondents had a child currently receiving EI services in a primarily urban Northeastern county. EI = Early Intervention.
Data Collection Procedure
Survey instrument
Given the dearth in investigating this topic in the literature and the exploratory nature of this study, survey questions were devised by the author based on personal experience as a former home-based and center-based EI provider as well as familiarity with the importance of family-centered practices (e.g., BLIND REVIEW; Dunst, Trivette, & Hamby, 2007; Tomasello, Manning, & Dulmus, 2010) and aforementioned gaps in the literature on the extent to which caregivers in Part C EI are supported by and sharing recommended strategies with informal and formal members of their support network. According to DeVon and colleagues (2007), “A panel of content experts is then asked to review the potential scale items and validate that they are appropriate indicators of the construct” (p. 157). For the current analysis, following expedited IRB approval, content validity of the devised questions was assessed via a Content Validity protocol (available upon request) completed electronically by multiple expert reviewers with diverse areas of expertise. More specifically, five expert reviewers provided detailed ratings and open-ended feedback to make sure the items would provide sufficient data to answer the research questions. They included an Early Childhood Special Education researcher, an Occupational Therapy researcher, the director of the county’s EI program, a home-based speech-language pathologist under the same model of service delivery, and a mother whose child previously experienced EI in the participating county. In addition to being aligned in their ratings and noting the clarity, comprehensiveness, and uniqueness of questions (e.g., “I’m so glad someone is asking these questions”), their feedback informed changes to wording and response options. The following includes an overview of the expert-reviewed provider survey and caregiver survey.
Provider survey
The provider survey, administered electrically via Qualtrics, comprised the following four sections: a section with 25 items on demographic items, overview of caseload, and reflection on training (see Online Appendix A, Section I); a section unrelated to the focus of this manuscript with 11 items on direct formal and informal interactions with other EI professionals (see Online Appendix A, Section II); a section with 22 items on interactions with caregivers and others in a family’s support network and guiding views to inform practice during home-based EI sessions (see Online Appendix A, Section III); and a final section with eight items reflecting on other key players in a family’s life who are not typically attending EI sessions (see Online Appendix A, Section IV). Across each section, readers should note the mix of closed and open-ended answer choices and ratings of satisfaction marked using a 7-point Likert-type scale.
Caregiver survey
The caregiver survey initially comprised items similar to the third and fourth sections of the provider survey. Perhaps, due to length and/or the online format, this option was not well received (only a few caregivers responding despite multiple reminder emails from the site director). As an alternative, the site director agreed to have EI program SCs (separate from those invited to complete the provider survey) disseminate a one-page condensed version of the survey for caregivers to briefly complete during a prescheduled home visit (see “Recruiting caregivers” section).
As shown in Online Appendix B, the condensed version comprised the following 12 items: four closed-ended items on demographics (i.e., caregiver’s gender, age of child in EI, length of time child has received EI, and respondent’s relationship to the child), one closed-ended item and two open-ended items on interactions with EI providers and likelihood of using recommended strategies when the provider is not there on a 7-point Likert-type scale, and five open-ended items on support network details (e.g., who provides emotional support, who is “very supportive” of their child receiving EI; which people are asked to use recommended strategies when they are alone with the child; and which people they are confident actually use the recommended strategies).
Focus group guiding questions
After survey results were aggregated, a small group of providers who volunteered to participate in a 60-minute focus group were asked to share insights regarding a series of questions. Certain questions/responses are not included here given that they are less aligned with the focus of this manuscript (e.g., respondents’ comfort level during EI sessions and extent to which they feel prepared from their training, extent to which teamwork with fellow providers is used to support their role, and desired next steps to improve service delivery). The two-part question that most clearly aligns with this article’s guiding research questions addressed the extent to which families are perceived to understand and use recommended strategies, and the extent to which providers are empowering caregivers to encourage other key people to use recommended strategies when alone with the child.
Data Analysis Procedure
Analysis
Ordinal and nominal data from the surveys were coded and entered into SPSS 23 to assess descriptive statistics and Pearson correlations. For the purpose of this analysis, only a few a priori correlations were investigated: whether certain reported coaching methods correlated with asking families about their carryover of strategy use, and the extent to which varying factors (e.g., type of provider, self-reported knowledge of Bronfenbrenner’s ecological systems theory, or self-reported familiarity with Maslow’s hierarchy of needs) may correlate with provider perceptions regarding the importance of involving others in a family’s support network.
The aforementioned 60-minute provider focus group was transcribed into a 24-page de-identified transcript. A phenomenological approach guided the importance of better understanding a sampling of providers’ personal experience in the field in connecting with caregivers and members of a family’s formal and informal support network. As noted by Creswell and Poth (2017), this approach “. . .is concerned with an individual’s personal perception or account of an object or event, as opposed to an attempt to produce an objective statement of the object or event itself” (p. 25). Using content analysis for coding purposes, the author organized and interpreted the textual data, and used color coding to sort blocks of text. As noted by Basit (2003), “Coding or categorizing the data . . . involves subdividing the data as well as assigning categories [which are] labels for allocating units of meaning” (p. 144). Vaismoradi, Turunen, and Bondas (2013) explain that content analysis includes assessing the frequency of different categories and themes. Aligned with this approach, the author tracked number of responses reflective of each category and the extent to which each category captured what was stated across participants (Sandelowski, 2001). To verify the trustworthiness of the qualitative findings (e.g., Connelly, 2016; Shenton, 2004), the author used member checking and peer debriefing. More specifically, member checking involved emailing a transcript with emerging themes to the five focus group participants and requesting their feedback. In addition, peer debriefing occurred with a doctoral student in the field of developmental psychology, who separately reviewed blocks of color-coded text from the de-identified transcript to verify inclusion in certain categories and emerging themes (99% intercoder agreement).
Results
This section presents findings to address the aforementioned guiding questions for EI providers (see Table 1 for EI provider characteristics) and caregivers of children receiving EI services (see Table 2 for caregiver characteristics). Note that the first two questions in each set pertain to provider–caregiver interactions, and the latter two questions in each set focus on interactions with members of caregivers’ formal and informal support networks.
Provider Responses
What is done to inform caregivers of recommended practices during EI sessions?
According to the provider survey, the majority of providers (84.8%) felt current service delivery was at least somewhat to very effective for most caregivers on their caseloads. Seventy-nine percent reported using a similar approach across caregivers, although this approach varied to some extent across providers. More specifically, 74.2% alternate between modeling and adult practicing, 51.5% agreed the caregiver and provider mostly sit side by side, 19.7% noted the caregiver mostly watches nearby, 19.7% noted sitting further away while the caregiver sits with the child, and 6% explained the adult only watches part of the session. Although 87.88% agreed they use “coaching” to support families, eight respondents (12.12%) were unsure.
To what extent is there perceived strategy use among caregivers and discussion about caregiver strategy use beyond the EI session?
Based on their anonymous survey responses, 83.3% of providers were somewhat to highly confident that most caregivers on their caseload understood the rationale for using recommended strategies. Despite this perceived awareness, the majority of providers were only somewhat confident that most caregivers on their caseload used strategies when the provider was not there (“somewhat confident”: 73%; “extremely confident”: 11%), and 75.76% doubted at least some caregivers’ carryover or strategy use. In terms of asking caregivers about their strategy use, 3% were “very unlikely,” 14% “somewhat likely,” 23% “likely,” and 61% were “very likely” to directly ask the caregiver about his or her strategy use beyond the EI session. Asking caregivers about strategy use negatively correlated with having the caregiver “watch for only part of the session” (r = −0.337, p < .01).
Focus group members emphasized that we must promote more family carryover in strategy use if we are going to help the child (to visibly see progress). One member noted, “I think that a lot of families do learn, and follow through, because our kids are making progress and we see it.” Another member similarly remarked, . . . we have some families that we struggle for them to understand what you’re trying. So then, it’s just a constant, every week, going back—did that strategy work? How can we, you know, change it, or switch it, or how can I make it make more sense to you—because they need to buy in if we’re going to see a difference.
At the same time, focus group members acknowledged this is a complex topic, with caregivers needing more support to understand expectations/roles. More specifically, four of the five participants noted that despite weekly check-ins and handouts, caregivers’ strategy use depends on their level of understanding. Similarly, they added that it would be beneficial to have more tailored flexibility in frequency of visits depending on family needs. Four of the participants also explained how caregiver strategy use depends on the extent to which providers are willing to clearly explain steps and pace instruction to have it make sense to each family. Four members also noted that this depends on larger issues the family may be experiencing, which may interfere with carryover of specific strategies. Two focus group members noted each of the following considerations: the need to offer more relevant trainings on this topic to providers, benefits that come with experience in learning to “read” a family, variability in some families being more hands-on than others, importance of aligning strategies with family’s existing routine or showing how to restructure their existing routine, and how strategy use may depend on the provider’s willingness to work with the family in places within the community (e.g., restaurant) where they are currently struggling. In addition, one focus group member noted each of the following as possibly impacting carryover among caregivers: severity of the child’s delay, if the family sees the provider really cares, and potentially mixed messages from different providers working with the same family (see Table 3 for a sampling of their direct quotes).
Sampling of Quotes From Focus Group Respondents (n = 5).
Note. Sampling of quotes from EI providers in the participating focus group; home-based EI services in a primarily urban Northeastern county (see narrative for extent to which focus group members voiced these considerations as potentially affecting caregivers’ strategy use). EI = Early Intervention.
What is done to promote awareness of and/or carryover of recommended strategies among members of each support network? Which factors may correlate with outreach efforts?
In the past 6 months, providers reported varied exposure to diverse members of caregivers’ support networks during home-based EI sessions, and they did not report high satisfaction with any of these interactions (see Table 4 for frequency of and satisfaction with their involvement).
Frequency of and Satisfaction With Key Partner Involvement During Home-Based EI Sessions.
Note. Participating EI providers (n = 66; 33% response rate) worked in an urban Northeastern county home-based Early Intervention program in the United States. EI = Early Intervention.
Other adult: identified as “boyfriend,” “nurse,” “cousin,” or “[child]care staff.”
Half of providers (51.5%) reported never having been asked by caregivers to talk with others outside the EI session about recommended strategies (39.4% had been asked to do so for only 1%-20% of their assigned families). Only 50% of providers “always” encouraged caregivers on their caseload to ask others to use strategies (5% noting they do not encourage this). In terms of follow through, however, providers were overall unclear whether caregivers actually ask others to use strategies (e.g., only 24% of providers suspecting more than 70% of caregivers on their caseload ask others to use strategies when the caregiver is not there). There was a positive correlation between self-reported familiarity with Bronfenbrenner’s (2001) ecological systems theory and encouraging caregivers to tell others to use strategies (r = 0.363; p < .01), and a link between familiarity with Maslow’s Hierarchy of Needs and reporting use of a family-centered framework (r = 0.276; p < .05).
The focus group discussion provided additional insights on empowering other key partners to use strategies when the provider and caregiver are not there. There was consensus that this needs to be better addressed. As one participant noted, “If the primary caregiver does not feel supported, it is often difficult for them to be consistent enough to effect changes.” Another participant explained, . . . you do try to get as many people in there because that is the child’s day—and as many people can do whatever needs to be done, that’s the best . . . well, if kid’s in [child]care couple days a week, kid’s with grandma couple days a week, it’s best if all those people know what’s going on and that they can add to it.
In terms of this being a complicated topic, three focus group participants noted variation in the extent to which families are reliant on providers to convey recommendations to others in their network. One attendee noted each of the following: two adults in the same home may not agree on what should be done, the caregiver may feel home goals are private and should not be shared with others, comfort in sharing may depend on trust and connection across one’s network, and there may be skepticism from some key partners as to whether the strategies are actually needed. Regarding suggestions to better address this issue, four focus group attendees noted that there should be opportunities for others to attend the EI session and learn strategies. Three attendees explained that they offer to visit the childcare center with the caveat of aligning strategies with others’ priorities, and one participant said it is important to offer to sometimes do visits across multiple settings. Two attendees also suggested providing copies of session notes for caregivers to give to others (see Table 5 for a sampling of their direct quotes).
Sampling of Quotes From Focus Group Respondents (n = 5).
Note. Sampling of quotes from EI providers in the participating focus group; home-based EI services in a primarily urban Northeastern county (see narrative for extent to which focus group members voiced these considerations as potentially affecting carryover of recommended strategies across members of a family’s support network). EI = Early Intervention.
Caregiver Responses
To what extent are caregivers satisfied with current service delivery (what is working/not working)?
Caregivers expressed comfort with providers’ validating concerns or brainstorming solutions (49.74%; n = 97; e.g., “talk to me in a way that I can understand and then follow through,” “I have a say so in what my daughter learns,” “We talk about [his] progress and the next steps to making him make faster progress”). Thirty-eight percent (n = 74) focused on providers’ modeling or explaining strategies (e.g., “explains actions” “using the toys I have in my home so I can use during the week”; “can practice, with [provider’s] feedback”; “give me advice on what I am and am not doing correctly”; “gives real world strategies”; “draws helpful examples from other cases”). Twenty-nine percent (n = 56) of caregivers acknowledged providers’ positive interactions with the child and/or others in the home (e.g., “getting on the floor and playing with toys my son likes; I like the way she works with all my family,” “includes siblings,” “friendly,” “personable,” “accommodating with evening times,” “uses my first name,” “[child] doesn’t want therapists to leave”). In terms of being empowered to use recommended strategies when the provider is not there, the majority of caregivers (n = 138; 70.77%) selected the highest rating on a 7-point Likert-type scale (“very likely”), with 44 respondents (22.60%) “likely” to use strategies and 11 respondents (5.64%) “somewhat likely” (n = 4) or “very unlikely” (n = 7) to carryover strategies.
When asked whether they would like to change or improve upon any aspect of service delivery, 70% of caregivers did not list any concerns (leaving it blank or voicing appreciation; “greatly appreciate the service of EI . . .”; “it has been a wonderful experience”). Thirty-seven respondents (19%) expressed concern with the existing session length and/or frequency. These participants sought additional hours beyond their once per week 45-min session. As two parents noted, “I would like them to have longer sessions. My son would do better, faster if they were allowed to be here longer,” “I think having a bit more time . . . would help. The sessions go too fast and it’s only like they have time to do 1 activity before they have to write papers.” In addition to desiring more time with EI providers, eight respondents (4.10%) noted dislike with providers talking down to parents or acting like an expert (e.g., “Talk to me as an equal and not like I am uneducated or do not already perform the tasks recommended,” “don’t criticize me or make me feel like a bad mom”). Another eight respondents (4.10%) sought more tailored, ecologically valid supports (e.g., “use a different way of disciplining my son,” “want more sessions to include being around other children,” “[I don’t like when they are] using strategies with which I don’t agree,” “[parent] not as involved”). Furthermore, three respondents (1.5%) requested each of the following: better team collaboration across providers, continued therapy with provider beyond 36 months, wanting provider to bring toys/supplies into the home, and more family–family connections with others in the EI program. There were also requested changes by one caregiver (0.5%) for each of the following: transportation to attend meetings, more visible success with Individualized Family Service Plan outcomes, revising questions that ask about child eligibility/assessment, less paperwork, more contact from EI program, and desiring more outreach initiatives to help caregivers seek EI services at an earlier age.
To what extent is there perceived support from members of the family’s support network?
Primary caregivers disclosed the extent to which they perceive others in their support network to provide emotional support. Most respondents in the caregiver survey (86.70%; n = 169) felt they received only unpaid, informal support (e.g., family, friends, coworkers), two caregivers (1.00%) had informal support from unpaid and paid sources (e.g., babysitter), three caregivers (1.50%) only received emotional support from professionals (e.g., doctors, childcare staff, EI therapists), and 12 respondents (6.20%) identified a mix of informal (e.g., family, friends, coworkers) and formal sources for emotional support. A small percentage (4.6%; n = 9) did not receive any emotional support. When asked which members of their informal/formal network were “very supportive” of their child receiving EI services, 54% had the same people listed for both questions but 46% (n = 90) reported differences in which individuals provided “emotional support” and which were “very supportive” of their child receiving EI services. Table 6 (below) highlights the type of informal/formal group member, rank ordered in terms of prevalence of both types of support.
Support Network’s Perceived EI Strategy Use and Support.
Note. Self-report from caregivers (n = 195) of children enrolled in a Northeastern, U.S. home-based Early Intervention (EI) program. For the first two columns, note that 27 respondents reported having no other person asked to use strategies, compared with 86.2% of the sample who asked at least one other person to use specific strategies when alone with their child. EI = Early Intervention.
To what extent do caregivers report sharing information on and/or asking for carryover in using recommended strategies with others in their network?
Although 27 respondents (13.8%) reported being the child’s only caregiver (i.e., no other person asked to carryover strategies with their child), the large majority (86.2%; n = 168) had at least one other key partner alone with the child at certain times on a regular basis. Aggregated findings indicated this sample of primary caregivers requested carryover (i.e., use of recommended strategies) from the grandparent, other parent, aunt/uncle, childcare providers, babysitter, caregiver’s friend, child’s older sibling, someone the caregiver was dating, and/or another therapist working with the child (see Table 6).
To what extent is there perceived compliance in using recommended strategies among members of the family’s support network?
Despite 86.2% asking one or more person to use strategies, there was little confidence in actual carryover (range = 3.1%-37.40% across different types of key partners). As one parent explained, “My mother is her caretaker during work hours [but] I’m not confident that my mother uses all strategies consistently.” Table 4 shows a consistent decline in percentages from reportedly asking others to use strategies to perceived confidence in their actual use of recommended strategies.
Discussion
This analysis enhances awareness of overlooked considerations that influence children and their caregivers in Part C EI. Current findings highlight the importance of assessing providers’ understanding and actual use of family-centered coaching in home-based EI settings (e.g., Salisbury, Cambray-Engstrom, & Woods, 2012). Providers should more actively involve the primary caregiver in interactive reflection and hands-on practice during the EI session. Arguably, if coaching practices were more widely used, caregivers might experience greater capacity to use strategies when the provider is not there and possibly be less interested in desiring longer, more frequent EI sessions. This is especially important given that having caregivers only observe for part of the session negatively correlated with providers asking about caregivers’ strategy use in the current study. If EI providers are not comfortable discussing strategy use with assigned caregivers, it calls into question whether caregivers should be expected to be comfortable discussing strategy use with other key partners.
Given that 86.2% of participating caregivers asked others to carryover strategy use when alone with the child, this suggests a need for more consistent exposure to best practices. Although it is important to continue looking at the contributing roles of providers and caregivers (Dawson et al., 2010; Roberts & Kaiser, 2015), results add to the literature by emphasizing that providers and caregivers must extend this ongoing conversation to include all key partners who directly interact with the developing child on a regular basis (e.g., Jackson, 2017; Jung, 2003; Wodehouse & McGill, 2009).
At the same time, it should not be overlooked that a smaller percentage of caregivers (13.8%) had no other person on whom they relied to carryover strategies. In light of the increased likelihood of caregiver strain, particularly when raising a child with special needs (Kang & Marks, 2014), EI providers should collaborate with SCs to offer caregivers tailored opportunities to meaningfully connect with others.
Implications for Practice
Prior to asking if caregivers are empowered to communicate recommended strategies with others in their support network, there needs to be strong assurances that caregivers, themselves, understand the underlying rationale for and how to engage their child in using the recommended strategies when the EI provider is not there. Although additional research on evidence-based recommendations is warranted, findings from current analysis offer several practical suggestions. As noted above, providers should advocate for caregivers being actively involved in the full EI session on a consistent basis. Focus group members reinforced the notion of tailored outreach (e.g., modeling, handouts, video clips, task analysis, aligning suggestions with existing routines) to make sure caregivers are clear in how to implement various strategies. Especially for those who teach in a traditional model of service delivery, there is an added consideration of ensuring families are not receiving mixed messages or conflicting recommendations from different EI providers who separately work with the family. It is also vital to be aware of and connect families with other professionals who can help address larger issues unrelated to the child’s diagnosis.
It is concerning that even though most caregivers in this sample requested that others use recommended strategies with their child, caregivers expressed low confidence that this request was being heeded. Considering how perceived lack of support can adversely affect family well-being and caregivers’ self-confidence (e.g., Lindblad, Rasmussen, & Sandman, 2005), EI administrators and providers must do more to empower caregivers in promoting implementation fidelity across settings and people. There may be benefits to asking probing questions, such as
Who is supportive of your child receiving EI?
Who else should use these strategies with your child?
How comfortable are you in talking about strategies with these other people?
What could we do to help others be more successful in using these strategies when they are alone with your child?
As mentioned earlier, eco-mapping may be a promising visual method to heighten providers’ awareness of the makeup and strength of connections within each family’s formal and informal support network. This technique also has the potential to “highlight the type of communication across family members, interventionists, and providers—a critical component of the provision of services in natural environments” (McCormick et al., 2008, p. 26).
Moreover, given that familiarity with Bronfenbrenner’s Bioecological Systems Theory and Maslow’s Hierarchy of Needs correlated with positive outcomes in this sample, it is unclear the extent to which different EI disciplines (e.g., physical therapists, occupational therapists, special instructors, speech-language pathologists) are exposed to such frameworks. More concerted effort is needed to emphasize the practical implications of these frameworks during preservice and in-service training.
Building on focus group insights, EI providers need to be more mindful of and informed as to how best to address unique interpersonal dynamics that may arise between caregivers and members of their support network. As noted earlier, such dynamics may include marital discord, distrust in sharing concerns outside the home, skepticism from others as to the need for proposed strategies, and taking time to show other key partners how providers can be sensitive to their individual interests and priorities. Respondents also shared recommended being more intentional in having others present during some EI sessions and in disseminating copies of handouts to promote information-sharing.
Implications for Research
Researchers should devise and assess tailored options to better understand strategy use, ability to articulate rationales, and satisfaction with others’ carryover. When caregivers say they request that others use strategies, it is unclear how this communication may actually look in practice. Perhaps, there are particular factors that make extended family, babysitters, and/or childcare providers more likely to comply with carryover requests (e.g., frequency of time spent alone with the child, including a rationale for why the particular strategy is important, the caregiver modeling exactly what he or she would like them to implement; follow-up from the EI provider to answer any questions). Building on insights from this exploratory study, researchers must devise instruments with high reliability and validity to more systematically assess perceptions and needs surrounding this topic across diverse samples. Research is also needed to explore and devise interventions to empower caregivers to effectively convey the need for particular strategies with diverse key partners. Furthermore, analysis is warranted to explore providers’ variable comfort in discussing strategy use and the extent to which recommendations may be well received (e.g., ecologically valid) among culturally diverse caregivers and members of their support network.
Limitations
Limitations of this exploratory study included reliance on self-report, potential for bias in caregiver responses, a low response rate of 33% for both EI providers and caregivers, and unknown generalizability of findings to providers and caregivers who differ from study participants. First, this study relied primarily on anonymous family and provider self-report. This aligned with the intent of this needs assessment in terms of collecting perception data (Markus, 1977) and respondents may otherwise not have felt as willing to voice specific concerns (Selkirk et al., 2009; Wiener & Lundy, 2014). Future research should also consider collecting direct observation data and multiple focus groups with both providers and parents.
A second concern is the potential for social desirability in caregiver responses (Krumpal, 2013). Although provider surveys were completed electronically, the condensed caregiver survey was brought to the family’s home by the SC who then sent the completed survey to the site director’s office (for the author of the study to review). Safeguards were put in place to minimize bias, including not having county EI providers see individual caregiver survey responses, asking SCs to not discuss or review responses, encouraging caregivers to contact the study author if wanting to discuss responses via phone, and including in the survey text that their specific answers would not be shared with providers. At the same time, it is possible that some caregivers may have doubted the anonymous nature of their responses and opted to skew at least some of their responses (particularly those related to satisfaction with providers and their own carryover of recommended practices) to be more socially desirable.
Another limitation is the low response rate of 33% for both EI providers and primary caregivers. This is not uncommon for an anonymous survey (e.g., Lubetkin, Lu, Krebs, Yeung, & Ostroff, 2010) and similar to concern with low response among providers and caregivers in other perception-based EI research (e.g., Higgins, Bailey, & Pearce, 2005; Iversen et al., 2003). Scholars have argued that a low response rate does not necessarily affect the validity of the collected data (Templeton, Deehan, Taylor, Drummond, & Strang, 1997); although not possible in the current analysis, these researchers recommend assessing nonresponsive data in such cases. Others have noted that the 33% response rate is slightly above the findings from a meta-analysis that web/email surveys without tailored follow-up (e.g., personalized contacts) should expect a 25% to 30% response rate (Cook, Heath, & Thompson, 2000). At the same time, readers are cautioned to consider that this may not be representative of others in the provider and caregiver samples who did not participate. Information on the survey was sent to eligible providers from the Part C county director, with reminder emails, but it is unclear the extent to which providers’ direct supervisors (across varying participating agencies) were encouraging them to participate. It is also suspected that response rate may have been adversely affected by the large amount of survey questions for providers (Duran, Oman, Abel, Koziel, & Szymanski, 2007), the potentially sensitive/private nature of the questions for caregivers, unknown confirmation on whether SCs asked all families on their caseload to participate, and/or lack of compensation for survey completion or other constraints across both groups (e.g., Higgins et al., 2005). Although this exploratory study sheds light on an overlooked area of inquiry, further research is needed to investigate needs and perceptions among a wider, more representative array of diverse EI providers and caregivers.
Furthermore, there is unknown generalizability to stakeholders in EI programs who have children solely receiving center-based EI services or a nontraditional service delivery model (e.g., Primary Service Provider model; Shelden & Rush, 2013). Findings from providers and mostly mothers in this one Northeastern section of the county may not apply to those in a different geographic region, or different caregivers varying in socioeconomic status. Results may also not generalize to stakeholders raising and working with children who have spent a longer time in EI. Regarding this latter concern, readers may recall that 48.72% of respondents’ children were only in their first 6 months of EI service delivery. Despite the federal Child Find mandate for earlier screening and referral of more eligible children earlier in development, this aligns with pervasive national concern with delayed access to needed EI services, with younger eligible children in the birth to 3 age range more commonly receiving fewer EI services than older children (e.g., BLIND REVIEW; Elbaum, Celimli-Aksoy, Marshall, & Berkovits, 2017; McIntyre & Zemantic, 2017; Williams, Perrigo, Banda, Matic, & Goldfarb, 2013).
Conclusion
High-quality family-centered EI services can minimize delays and promote long-term success for the child and family unit. There is insufficient focus on family empowerment (Trivette et al., 2010) and caregivers’ formal and informal support networks (Bronfenbrenner, 2001; Dunst, 2000). Findings elucidate novel aspects of EI service delivery needing further analysis and improvement. To bolster child and family outcomes, providers need guidance to engage caregivers in the coaching process, discuss, and embrace variability in family support systems, as well as fully empower caregivers to promote carryover of recommended, tailored strategies across members of their formal and informal support networks.
Supplemental Material
Supplemental_1 – Supplemental material for Are We Maximizing the Role of Caregivers’ Support Networks in Early Intervention?
Supplemental material, Supplemental_1 for Are We Maximizing the Role of Caregivers’ Support Networks in Early Intervention? by Nicole Megan Edwards in Journal of Early Intervention
Footnotes
Acknowledgements
Special thanks to Lynne Matejicka, Susanna Zemble, Sophie Askienazy, Dr. Lynn Jaffe, and Dr. Barbara Schwartz for serving as expert reviewers on the devised survey. Much appreciation is extended to the families and providers from the Northeastern Early Intervention (EI) program who participated in this research as well as to the Service Coordinators who aided study recruitment.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded from an internal Grant from Rowan University (#10110-60988-7460-12).
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References
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