Family Involvement During Comprehensive Developmental Evaluations: Perspectives of Diverse Mothers

Abstract

Objective

Early diagnosis and social support post-diagnosis (i.e., family involvement) can lead to improved outcomes for children with autism spectrum disorder (ASD) and other developmental disorders. Children of minority ethnic and racial groups are typically diagnosed later in childhood compared to White children, contributing to disparities in outcomes. Research has not yet explored family involvement during comprehensive developmental evaluations, nor accounted for cross-cultural differences in family roles and involvement. This qualitative study sought to characterize the nature and impact of family involvement during the developmental evaluation process among racially and ethnically marginalized mothers of children with developmental delays and possible ASD.

Method

Mothers (N=27) of children who had a positive autism screen during their 18- or 24-month well-child visit but did not receive an ASD diagnosis following comprehensive developmental evaluation participated in individual semi-structured interviews exploring experiences with developmental screening, related services, and family involvement/social support. Qualitative data were transcribed, coded, and analyzed using applied thematic analysis. Data were stratified by partner status (i.e., partnered vs. non-partnered) to examine differences in support and family involvement across varying family compositions.

Results

Three qualitative themes emerged: 1) mothers sought family involvement when making decisions about pursuing developmental evaluations, 2) family involvement impacted mothers’ navigation of logistical challenges, and 3) mothers involved family members for emotional support. Differences by partner status emerged in themes 1 and 2.

Conclusion

Findings highlight benefits of and potential approaches to harnessing family involvement to support parents’ navigation of the developmental evaluation process and ultimately improve child outcomes.

INTRODUCTION

Early screening, diagnosis, and intervention are critical for optimal outcomes for young children with developmental delays.¹ As autism spectrum disorder (ASD) is one of the most common early childhood neurodevelopmental disorders², autism-specific screening is recommended for all children at 18- and 24-month pediatric well-child visits.³ Even for children with a false positive autism screen (i.e., positive autism screens ultimately not yielding an autism diagnosis), early screening may prompt referrals for needed early intervention and comprehensive developmental evaluations.⁴ From initial recognition of developmental concerns to ultimate diagnosis, the developmental evaluation process can span 1–2 years.⁵ Common challenges during the developmental evaluation process include both logistical issues (e.g., long waitlists, difficulty obtaining intermediary intervention services, traveling far distances for evaluations), and emotional impacts (e.g., anxiety about possible diagnostic outcomes).^6,7 Families from marginalized racial andethnic groups⁸ or single-parent households⁹ experience more delays in this process due to individual and system-level barriers such as logistical challenges with following through on appointments, lack of available interpreters, and cultural differences in developmental expectations.

Family composition may influence families’ experiences of the developmental evaluation process. For example, single parents must manage both typical parenting responsibilities (e.g., child-rearing, household management) and stressors related to single parenthood (e.g., sole responsibility for caregiving) while navigating the developmental evaluation process.^10,11 Fathers’ involvement in child-rearing contributes significantly to improved developmental outcomes for children, underscoring the importance of co-parenting when raising children with developmental concerns.¹² Yet, regardless of marital status, mothers often hold more child-rearing responsibilities than fathers across cultures, due to social norms dictating gender roles.^10,13 These compounded demands are associated with poorer health and well-being, higher levels of stress, and greater risk for clinical depression in caregivers of children with ASD.¹⁴ However, the ways in which these stressors may affect how caregivers experience and navigate the developmental evaluation process have yet to be empirically evaluated.

For many racially or ethnically marginalized families, extended family members play instrumental roles in child-rearing. This precedence of prioritizing family over the individual and sharing responsibilities (finances, living arrangements, child-rearing, etc.) amongst multiple family members is well-documented as the social construct of behavioral familism.¹⁵ However, there are mixed findings regarding whether and how behavioral familism affects families’ experiences of having a child with developmental concerns. Family involvement in child-rearing may reduce primary caregivers’ stress, as it allows for shared responsibility and opportunities for collective decision-making for the child.¹⁶ Furthermore, family involvement improves children’s developmental outcomes by providing more opportunities to practice skills taught through early intervention services, maximizing their impact.¹⁶

With this context, family involvement may be particularly important for supporting and improving navigation of structural and logistical barriers that racially or ethnically marginalized families face. Although caregivers indicate benefits from the developmental evaluation process regardless of diagnostic outcome¹⁷, marginalized families (e.g., minoritized racial/ethnic groups, low-income) experience additional logistical barriers that can interfere with scheduling and attending appointments and decrease the likelihood of completing the developmental evaluation process when first recommended.¹⁸ In addition, there is often a greater power differential between families of marginalized racial/ethnic backgrounds and their healthcare providers. Consequently, families often feel less confident in their ability to communicate with providers and less empowered to use available services.^18,19 These challenges often extend post-diagnosis and contribute to decreased access to high-quality intervention services.⁵ Together, these barriers result in diagnostic and service delays that contribute to racial/ethnic and socioeconomic-based disparities in outcomes (e.g., social communication and adaptive functioning).²

Yet, some research indicates that involving extended family members in caregiving after a child’s ASD diagnosis may require families to navigate intrafamilial stigma towards ASD and subsequent conflicts about best courses of action.²⁰ As such, caregivers may be reluctant to share initial developmental concerns or confirmed diagnoses with extended family members, resulting in caregivers feeling socially isolated. It is frequently recommended that healthcare providers increase educational opportunities for extended family members following autism diagnosis and intervention to reduce the burden of stigma and social isolation on caregivers.²⁰ However, the burden of stigma from extended family members during the evaluation period has yet to be addressed empirically.

Altogether, previous research shows that optimal long-term outcomes are associated with both completion of an in-depth developmental evaluation and greater extended family involvement in intervention.^16,20 However, available research has yet to examine family involvement during the developmental evaluation amongst those of racially and ethnically marginalized backgrounds. Understanding how and to what extent family members are involved during the developmental evaluation process may inform best practices to improve quality of care for marginalized families of children with developmental concerns. As with all screening, there are trade-offs between maximizing accurate identification of children with true-positive ASD screens (i.e., individuals who ultimately receive autism diagnoses) while minimizing occurrence of false-positive screens (i.e., those who screen positive but do not receive an ASD diagnosis). Understanding families’ experiences of screening – including relative benefits and costs – requires also understanding the unique experiences of those who receive a false-positive screen. To date, there is substantial literature regarding family involvement amongst individuals with true-positive screens for autism²¹; however, literature on individuals with false-positive screens is scant. Rather than duplicate existing literature, this paper focuses on the novel and understudied population of families of children with false-positive screens to clarify how the existing literature regarding children with true-positive ASD screens can be generalized.

As such, the current qualitative study describes family involvement during the developmental evaluation process among racially and ethnically marginalized mothers of children referred for a comprehensive developmental evaluation due to concern for ASD but who ultimately did not receive a diagnosis of ASD (i.e., those having false-positive ASD screens). In particular, this study aimed to reflect perspectives on how and across which aspects of families’ experiences with developmental evaluation (i.e., decision-making, navigation of logistical challenges, emotional support) their family members were involved.

METHODS

Sample and Recruitment

Participants in this study are a subsample from the DBPNet multi-site trial (Project EARLY) in Feinberg et al, 2021 and the same sample as that of Eilenberg et al, 2022. Participating families were recruited from a large DBPNet multi-site trial (Project EARLY) focused on reducing disparities related to timing of ASD diagnosis by exploring the efficacy of family navigation services versus conventional care management. ^17,22 Participants were recruited from urban primary care centers affiliated with three academic medical centers in Massachusetts, Pennsylvania and Connecticut which were part of the Project EARLY trial. Eligible families had a child with a positive autism screen (Modified Checklist for Autism in Toddlers – Revised with Follow Up; MCHAT-R/F)²³ at the time of their 18- or 24-month well-child visit, but did not receive a diagnosis of ASD after a comprehensive developmental evaluation (i.e., ultimately had a false-positive autism screen), and spoke English or Spanish. Comprehensive developmental evaluations were completed in specialty clinics and typically included a detailed interview/history review, administration of a standard ASD assessment (e.g., Autism Diagnostic Observation Schedule, 2nd edition) and feedback visit, though varied somewhat across the three sites from which participants were recruited. ^17,22 Purposive sampling was used to ensure breadth across family race/ethnicity, child’s gender and age, and absence/presence of developmental concerns raised by parents prior to screening (see Table 1 for demographic data). Eligible families were enrolled until thematic saturation was reached for the primary research questions.²⁴

Table 1.

Demographics

Child Demographics	Mean (SD) or N (%)
Child Age	4.19 (0.90)
Child Sex  Male	18 (69.23%)
Female	8 (30.77%)
Child Race  Black/African American	15 (57.69%)
More than one/Other	9 (34.61%)
Asian	2 (7.69%)
Child Ethnicity  Latina/Hispanic	8 (30.77%)
Not Latina/Hispanic	18 (69.23%)
Eligible for Public Insurance	24 (92.31%)
Recruitment Location  Massachusetts	12 (46.15%)
Pennsylvania	11 (42.31%)
Connecticut	3 (11.54%)
MCHAT-R/F Score	7.27 (2.74)
Days Until Diagnostic Resolution	134.08 (116.78)
Months From Diagnostic Resolution to Interview (Range of 5–45 months)	25.11 (11.36)
Received Family Navigation Services  Yes	15 (57.69%)
No	11 (42.31%)
Diagnosis Rendered  Mixed Receptive-Expressive Language Disorder	7 (26.92%)
Developmental Disorder of Speech or Language	6 (23.08%)
Developmental Delay	5 (19.23%)
Expressive Language Disorder	3 (11.54%)
Global Developmental Delay	2 (7.69%)
Gross Motor Delay	1 (3.85%)
Fine Motor Delay	1 (3.85%)
Disruptive Behavior Disorder	1 (3.85%)
Mother Demographics	N (%)
Mother’s Marital Status  Single	11 (42.31%)
Married/Engaged	6 (23.08%)
Living with a partner	5 (19.23%)
Separated/Divorced/Widowed	3 (11.54%)
Other	1 (3.85%)

Given specific consideration of family involvement during the evaluation process in the unique context of receiving a false-positive ASD screen, only families of children who ultimately did not receive diagnoses of ASD were included. Although none of the children of participating families received a diagnosis of ASD, all were diagnosed with a developmental disorder or delay (i.e., speech/language developmental disorder, global developmental delay, fine or gross motor delay) following the comprehensive developmental evaluation.

Procedures

Eligible families were contacted via phone or text by the research team to discuss the current sub-study and gauge interest in participation. Twenty-seven families agreed to participate and completed study procedures. One family was excluded, as it was later reported that the child was diagnosed with ASD. The research team reviewed study information with interested mothers, obtained verbal consent and scheduled in-person interviews based on families’ preferred time and location (e.g., their home, community library).

Data collection was conducted in participants’ homes and other community locations from November 2018 to December 2019. Time from completion diagnostic resolution following to completion of the qualitative interview ranged from 5–45 months (Mean = 25.11, Standard Deviation = 11.36). Upon traveling to participants’ preferred location for in-person meetings, members of the Boston University-based research team reviewed consent information and obtained verbal consent prior to each interview. Research staff conducted semi-structured individual interviews (approximately 60 minutes) with one primary caregiver of each participating family. Qualitative interviews were recorded, transcribed verbatim, and checked for accuracy. Interviews conducted in Spanish were translated to English to allow for systematic coding by all members of the research team. Translations were checked by bilingual/bicultural research team members for translation accuracy. Participants were compensated $50. This study was approved by the Boston University Medical Campus Institutional Review Board.

Qualitative Interview Description

Participants completed in-depth semi-structured individual interviews in English (N= 20) and Spanish (N= 6). Interviews included open-ended questions about experiences with developmental screening and related services, descriptions of family involvement and social support, and recommendations on how the autism screening and evaluation process can be improved. Example interview questions included: “Tell me about your experience discussing the screening results and recommendations with family members, friends, or other people” and “In what ways did the screening result and related services affect your relationships with your family members?”. Throughout data collection, the interview guide evolved to incorporate emerging findings.

Data Analysis

Interview transcripts were entered into NVivo 12 software²⁵ and systematically coded by research team members (A.O.B., J.E., D.K. & N.D.C.) with close oversight by an advanced qualitative methodologist with expertise in culture, autism, and child development (K.L.). The initial coding structure was drafted based on the interview guide. The coding structure included detailed instructions on when to apply each code with exceptions and examples. To ensure inclusion of findings that emerged from interviews, a subset of transcripts (N=6) were coded collectively by all members of the coding team. Minor additional changes were made to the coding structure while coding additional transcripts to account for newly emerging findings. All transcripts were coded using the finalized coding structure. Twenty percent of transcripts were double coded, and inter-coder concordance was calculated at 86% by dividing the number of concordant codes by the total number of codes assigned to each interview transcript.

Coded transcripts were analyzed inductively using applied thematic analysis.²⁶ Individual codes related to family involvement guided analysis of interview data. Data from these codes were stratified by partner status: partnered (married, engaged, living with partner) vs. without partner (single, divorced, separated, widowed) to account for differences in family structure. Themes were derived inductively using an exploratory (content-driven) approach. ²⁶

Reflexivity

The authors of this manuscript offer a positionality statement to be transparent about our backgrounds and the lenses through which we view research and research processes. Qualitative interviewers were cisgender young adult and middle-aged females of various racial/ethnic backgrounds. More broadly, the authors of this manuscript represent various racial/ethnic backgrounds, religions/spiritual orientations and sexual orientations. Professionally, we hold graduate degrees in Psychology, Science, Nursing, Anthropology, Public Health, and Medicine. Our academic ranks span master’s and doctoral-level graduate students to Assistant and Associate Professors. Our scholarship uses both qualitative and quantitative methods, and we strive for antidiscrimination in our research and clinical efforts.

RESULTS

Thematic Summary

Family members’ involvement throughout the developmental evaluation process, including differences based on partner status, is described by three overarching themes: 1) mothers sought family involvement when making decisions about pursuing developmental evaluations, 2) family involvement impacted mothers’ navigation of logistical challenges, and 3) mothers involved family members for emotional support. Involved family members included extended family members such as caregivers’ parents and siblings (child’s grandparents and aunts/uncles), cousins, and immediate family members including caregiver’s partners or the child’s father and other children (child’s siblings). Table 2 includes a summary of themes and exemplar quotes.

Table 2.

Key Themes & Supporting Quotes

Theme 1: Mothers Sought Family Involvement When Making Decisions About Pursuing Developmental Evaluations
Theme Summary	Exemplar Quotes
• Regardless of partner status, either mothers or children’s grandmothers were often the individuals who first voiced concern about the child’s development.	“My mom had noticed that [child] wasn’t talking when he was supposed to, so she took him to a doctor and the doctor had agreed with her.” (non-partnered mother)
• Regardless of partner status, when mothers first initiated conversations about their concerns, mothers were often discouraged by family members.	“Sometimes I didn’t want to take him [to the developmental assessment], and sometimes I did. And since I sometimes talk with my family, they told me, ‘No, [the doctors] are exaggerating. They don’t know.’ So, it’s like you don’t know who you want to listen to – the professional or what you’re told at home.” (partnered mother)
• Regardless of partner status, mothers often engaged in independent decision-making despite lack of consensus with family members.	“I was scared because I wasn’t ready for the truth... I didn’t want [the doctors] to tell me something that wasn’t ready to hear. So, really [I] was trying to make sure I was doing the right thing. As a mom, you have to make decisions for your child that your child can’t make. So, I just felt like, I was doing the best thing when I made that decision. Go and get her tested. Even though her dad just felt as though– you know, there’s nothing wrong with her, but as her mom, I said, ‘No, I’m still gonna go and have that test.’ Because you never know when it comes to your child.” (non-partnered mother)
Theme 2: Family Involvement Impacted Mothers’ Navigation of Logistical Challenges
Theme Summary	Exemplar Quotes
• Experienced challenges with navigating logistics differed based on partner status.	“So, his dad took us to like all of the appointments overall. I tried to like make it so that it’s not cuttin’ into any of his time or the things he needed to do.” (partnered mother)
	“My grandma and my sisters, they [were] here. They were very supportive. They even help me take her to all the appointments and stuff. [They] was real supportive.” (non-partnered mother)
	“It was just all me getting her there, making appointme nts, trying to figure out who to speak to and stuff like that. – - If you’re a single parent, you’ve got to do everything.” (non-partnered mother)
• Mothers struggled to balance accepting support from family members with their personal desires for self-reliance.	“I’m a very independent person, so it’s kinda hard for his dad to even help me because… I was raised to be your own – you know like, don’t depend on nobody, but just if you need something, then try to do as much as you can yourself rather than depend on the next person… I know their intentions are good, but you clearly don’t know what you’re doing or how to do it, or how to fix it, or how to help, but, you’re just tryin’ to help at the time with that. Instead of me getting’ frustrated, I’d just rather just me do it.” (partnered mother)
Theme 3: Mothers Involved Family Members For Personal Emotional Support Needs (*no differences based on partner status)
Theme Summary	Exemplary Quotes
• Emotional support often empowered mothers to follow through with the developmental evaluation process even in moments of disagreement.	“Everyone [in my family] gave me advice; they gave us emotional support for us to continue the process with our daughter.” (partnered mother)
• Mothers’ emotions of overwhelm and loneliness persisted despite outpourings of support from family members.	“I remember calling my mother. She told me not to worry, that all kids are different... And that leave me more calmed. But at the same time, I asked myself ‘what would happen if he can’t talk?’... So even if my mother was encouraging us, he is my son, and I was worried sick.” (non-partnered mother)
	“I had nobody. I mean, physically I had a lot of people [in my family]. Mentally, I had no one. It’s a big difference.” (non-partnered mother)

Mothers Sought Family Involvement When Making Decisions About Pursuing Developmental Evaluations

Mothers sought out extended family involvement during initial identification of developmental concerns, regardless of partner status. When deciding whether to initiate conversations about developmental concerns with pediatricians, mothers described conferring with family members about observed delays in meeting expected developmental milestones. Family members used their past experiences with other children in the family (siblings, cousins, etc.) as points of reference when sharing input as to whether the primary caregiver should pursue a developmental evaluation. Mothers’ trust in family members’ input was often increased by family members’ established familiarity with the child. Regardless of partner status, mothers’ mothers (children’s grandmothers) were often the relatives who first voiced concern about the child’s development.

Sharing Developmental Concerns with Providers.

When family members were the first to encourage mothers to raise developmental concerns with the pediatrician, mothers generally agreed. However, when mothers initiated conversations with their families about their concerns, they were often discouraged by family members from seeking professional opinions or encouraged to delay consultation with the child’s healthcare provider until the child had more time to develop. Overall, mothers often elected to seek healthcare providers’ opinions regardless of family members’ agreement and did so independently. Mothers attributed their independent decision-making to their sense of responsibility for their child regardless of others’ opinions, which outweighed the risk of conflict within the family. This pattern did not differ by partner status.

Differences Based on Partner Status.

Differences in decision-making processes emerged based on partner status. Partnered mothers typically first sought involvement from and initiated conversations with their partners to confirm shared concern and reported little disagreement with planning next steps. Inclusion of partners in decision-making processes (e.g., whether to follow through with ASD evaluation) was attributed to their shared responsibility for the child. Partnered mothers’ inclusion of extended family in decision-making conversations was typically secondary to inclusion of their partners and only to share updates on what decisions were made.

Among non-partnered mothers, there was variability in who they first involved in decision-making processes depending on whether their child’s biological father was involved in the child’s life. For example, if biological fathers were involved in the child’s life, non-partnered mothers typically first included their child’s biological father in decision-making processes before involving extended family members. However, unlike partnered mothers, there was variability in non-partnered mothers’ reports of agreement about identification of developmental concerns and how to proceed, which often created yet another challenge to navigate during the evaluation process. In particular, several non-partnered mothers described feeling dismissed and frustrated with their child’s father when sharing concerns and desires to pursue comprehensive evaluations, as many fathers reportedly did not express concern about their children’s development.

Family Involvement Impacted Mothers’ Navigation of Logistical Challenges

Family involvement was key in helping mothers overcome logistical barriers to both undergoing evaluation and accessing early intervention services. In particular, family involvement with providing transportation to appointments facilitated mothers’ abilities to successfully schedule and attend appointments for their child with developmental concerns. Additionally, family members who provided sibling childcare reduced caregivers’ responsibilities when navigating appointments.

For some mothers, their desire for self-reliance created difficulty with accepting assistance from family members. In these cases, while mothers expressed appreciation for the offers of assistance, they struggled with accepting the offers. Other mothers attributed this difficulty to concerns about setting a precedent of family involvement that might compromise self-determination.

Differences Based on Partner Status.

Though logistical challenges were ubiquitous, the extent to which logistical challenges hindered mothers’ ability to obtain developmental evaluation differed based on partner status. Partnered mothers reported easier access to services and navigation of the evaluation process, as they relied on their partner to reduce logistical challenges. However, these mothers also often had to restrict appointment times to accommodate their partner’s schedule.

For non-partnered mothers, siblings and parents (child’s aunts/uncles, grandparents), or the child’s other biological parent typically provided logistical support. However, logistical challenges were pronounced for non-partnered mothers as they were solely responsible for navigating the developmental evaluation process, while still performing typical caretaking responsibilities.

Mothers Involved Family Members For Emotional Support Needs

Mothers sought out family members for emotional support regardless of partner status. In particular, mothers appreciated encouragement and reassurance from their own mothers and other family members when sharing worries and uncertainty about their child’s development and future. This emotional support often empowered mothers to follow through with the developmental evaluation process. Additionally, even in moments of disagreement with family members, mothers explained that how family members expressed their differences in opinion and responded to mothers’ opinions was crucial to feeling supported versus unsupported.

Mothers also expressed feeling lonely despite family members’ active involvement and encouragement during the developmental evaluation process, noting that their worry and emotional distress overpowered family members’ emotional support. Family members’ input that contradicted professional recommendations was particularly unhelpful at key points in the decision-making process (i.e., deciding whether to follow through on referrals for evaluation or services) and often exacerbated mothers’ worry.

Differences in Partner Status.

No differences emerged based on partner status.

DISCUSSION

The developmental evaluation process can be lengthy, and families of marginalized racial and ethnic backgrounds often encounter significant challenges to successful follow-through.⁸ Despite advantages of family involvement after ASD diagnosis (i.e., reducing mother’s stress and improving children’s developmental outcomes)^16,20, little research has addressed family involvement during the developmental evaluation process, particularly amongst families of children who ultimately do not receive ASD diagnoses. Current findings highlight racially and ethnically diverse mothers’ retrospective reflections on the nature and impact of family involvement experienced during the ASD evaluation process.

Family members, which included mothers’ partners, mothers (children’s grandmothers) and siblings (child’s aunts and uncles) influenced mothers’ decision-making, navigation of logistical challenges, and feelings of emotional support throughout the ASD developmental evaluation process. Mothers’ reporting of children’s grandmothers being involved in supplying emotional support was consistent with recent research acknowledging grandparents as a source of emotional support despite difficulty understanding and accepting diagnoses of disability.²⁷

Partnered mothers emphasized relying primarily on their partners for logistical and emotional support, while non-partnered mothers primarily relied on their own mothers or other family members. Though partnered mothers expressed less difficulty navigating logistical challenges because of their partners’ involvement, they nonetheless experienced emotional challenges throughout the evaluation process. This finding is consistent with available literature emphasizing more primary caregiving responsibilities and subsequently associated stress for mothers even when general parenting roles are shared with partners.^10,13 Current findings complement and extend those of a previous publication from the current sample, in which parents of children with false-positive screens expressed a myriad of persisting emotions including, anxiety, fear and hopefulness during the wait time after comprehensive developmental evaluations and once receiving the final determination that their child did not have ASD.¹⁷ As such, while having a partner may lessen the frequency of certain challenges (i.e., transportation to appointment), partnered mothers still voice the need for supports around emotional challenges in order to minimize stress and related emotions during the developmental evaluation process.

Non-partnered mothers emphasized that the stress of being a single parent compounded the challenges faced. Consistent with available literature on single parents of children with autism post-diagnosis^9,10, consideration of the challenges faced by single mothers may be particularly beneficial to increasing early diagnosis and access to services. Additionally, our findings related to non-partnered mothers’ inclusion of children’s fathers when deciding how to proceed after identifying developmental concerns extends existing literature, which thus far has been limited to post-diagnosis co-parenting amongst intimate partners. Findings highlight the importance of the variable role of secondary caregivers during the evaluation process.

Clinical Implications

As the effects of parenting stress on a child’s well-being are well-documented in available literature^10,11,14, our findings emphasize harnessing supportive family involvement as an important mechanism for improving racially/ethnically marginalized mothers’ experiences of addressing developmental concerns. This is particularly important for families of children with false-positive autism screens as their ultimate diagnoses may not yield as much access to intervention services as a diagnosis of ASD (e.g., limited access to ABA therapy or specialized schools with developmental supports). In doing so, mothers may become better positioned to navigate the demands of the autism evaluation process, successfully complete it, connect with services/resources, and ultimately improve their child’s developmental trajectory, regardless of whether they receive a diagnosis of ASD. Furthermore, given frequent loneliness and worry, providers’ validation of the stressful nature of the developmental evaluation process may be particularly prudent for all mothers, even partnered ones.

Healthcare providers are instrumental in ensuring that mothers access and receive necessary family supports during the developmental evaluation process, as they are already well-versed in providing resources and supports post-diagnosis.²⁰ Providers modeling validation of mothers’ experiences to family members may be useful for moving mothers towards helpful change. Providers should also discuss family members’ involvement with mothers during initial visits to determine what support is needed, as this may differ depending on how families’ cultures prioritize shared family responsibility and how families’ compositions lend themselves to family involvement. Our finding that mothers widely seek support from family members highlights the necessity of strengthening family members’ support.

Providers are uniquely positioned to offer supportive communication and solution-oriented intervention and model accordingly to extended family members. Yet, providers’ typical professional time constraints may complicate feasibility of solely relying on them to effectively address mothers’ worries and doubts.²² As such, family navigators and community health workers may also be well-suited to serve in this capacity.

Strengths & Limitations

This study is strengthened by focusing on mothers of marginalized racial and/or ethnic backgrounds, who are typically underrepresented in research on intellectual and developmental disorders.^8,28 The qualitative research approach was particularly well-suited to investigating processes underlying mothers’ inclusion of family members during the diagnostic process and solicited more nuanced implications of mothers’ experiences. Furthermore, given the exploratory nature of this research in a population that is overwhelmingly understudied, the use of qualitative methods was a preferred approach. Lastly, the stratification of data by partner status allowed for consideration of the extent to which family involvement may differ across family types, which has not been previously explored in racially and ethnically diverse samples.

While these results provide valuable insight into the role of family involvement during the evaluation process, there are limitations. First, the focus on ASD screening alone is a limitation; however, findings of this study likely extend to families of children undergoing comprehensive evaluation for other developmental concerns. Additionally, though this study was comprised of a racially and ethnically diverse sample, mothers were recruited from major metropolitan areas and this research was limited to English- and Spanish-speaking mothers. As such these results may not be as generalizable to mothers from more suburban or rural areas or of other language backgrounds. Also, as a result of asking families to identify their child’s primary caregiver, all participating caregivers were mothers, and as such this research does not adequately capture other caregivers’ perspectives. However, the participation of mothers is consistent with available research and reflects cross-cultural gender norms.^10,12,13 Additionally, interviews were completed within a range of 5–45 months (Mean = 25.11, Standard Deviation = 11.36) after families underwent comprehensive evaluations which allowed for sufficient time to reflect on their experiences. Recall bias is a limitation of all retrospective studies, yet the distance also may have given mothers the ability to reflect on the implications of their experiences. Future research should aim to deepen understanding of caregivers’ experiences by capturing their perspectives while undergoing the evaluation process and immediately after being told that their child does not have ASD. Additionally, the receipt of family navigation services experienced by >50% of the sample does not represent the resources available and offered to most families during the diagnostic process, and thus, may impact generalizability of the current findings. Specifically, it is possible that findings of this study may not fully capture the depth of challenges experienced by families with less individually tailored resources. Lastly, the stratification by partner status may be viewed as an oversimplification of the complexity of family composition. Though partner status is only one aspect of family composition, partner status and relationships between parents are established within available literature as aspects of family configuration integral to better understanding family dynamics broadly²⁹ and parent-child relationships specifically.³⁰ Future research should better account for the complexity of diverse family compositions.

Conclusions

Overall, mothers reported nuanced benefits of family involvement during the developmental evaluation process. Family involvement and family structures are key contributors to mothers’ functioning during navigation of the developmental evaluation process. Impact of family involvement was influenced by family structure and how well mother’s needs were met. Given caregivers’ integral role in improving outcomes for children with developmental concerns, efforts to best support the child must begin with acknowledging best practices to support the primary caregiver. Altogether, findings emphasize the need for more targeted supports for mothers of children undergoing the comprehensive diagnostic developmental evaluation process.