Caregiver perceptions of communication difficulties in young people with Down syndrome: A cross-sectional survey study

Abstract

Introduction and objectives

Young people with Down syndrome (DS) often experience challenges in spoken language, particularly in expressive domains, which may influence participation across a range of communicative contexts and everyday support environments. The aim of this study was to explore caregiver perceptions of communication difficulties in young people with DS in Spain.

Materials and methods

A cross-sectional survey was completed by 44 caregivers in Spain, who provided information on 69 young people with DS aged between 8 and 35 years. The questionnaire examined caregiver perceptions of expressive and receptive language abilities, communication experiences across contexts (home, school, and social settings), and beliefs about factors perceived to influence speech production.

Results

Caregivers most frequently perceived receptive language abilities as stronger than expressive abilities (72.5%). Communication difficulties were reported most often in school (47.8%) and social contexts (44.9%), and less frequently in the home environment (18.8%). Beliefs regarding the role of orofacial muscle tone in speech production varied, with 36.2% of caregivers perceiving an influence and a substantial proportion expressing uncertainty.

Conclusions

Caregiver reports indicate that expressive language is perceived as a key area of challenge for many young people with DS, particularly in contexts with higher communicative demands, and should be interpreted as complementary to, rather than a substitute for, direct clinical assessment. These findings underscore the value of incorporating caregiver perspectives in research on communication in DS while highlighting the importance of cautious interpretation and alignment with current evidence-based knowledge.

Resumen

Antecedente y objetivos

Los jóvenes con síndrome de Down suelen experimentar dificultades en el lenguaje oral, particularmente en los dominios expresivos, lo que puede influir en su participación en diversos contextos comunicativos y entornos de apoyo cotidianos. El objetivo de este estudio fue explorar las percepciones de los cuidadores sobre las dificultades de comunicación en jóvenes con síndrome de Down en España.

Materiales y métodos

Se completó una encuesta transversal por 44 cuidadores en España, quienes proporcionaron información sobre 69 jóvenes con síndrome de Down con edades comprendidas entre los 8 y los 35 años. El cuestionario examinó las percepciones de los cuidadores sobre las habilidades de lenguaje expresivo y receptivo, las experiencias comunicativas en distintos contextos (hogar, escuela y entornos sociales) y las creencias acerca de los factores percibidos como influyentes en la producción del habla.

Resultados

Los cuidadores percibieron con mayor frecuencia que las habilidades de lenguaje receptivo eran superiores a las expresivas (72,5%). Las dificultades de comunicación se reportaron con mayor frecuencia en la escuela (47,8%) y en contextos sociales (44,9%), y con menor frecuencia en el entorno familiar (18,8%). Las creencias relativas al papel del tono muscular orofacial en la producción del habla fueron variables: el 36,2% de los cuidadores percibió una influencia, mientras que una proporción considerable expresó incertidumbre.

Conclusiones

Los informes de los cuidadores indican que el lenguaje expresivo se percibe como un área clave de dificultad para muchos jóvenes con síndrome de Down, especialmente en contextos con mayores demandas comunicativas, y deben interpretarse como un complemento, y no como un sustituto, de la evaluación clínica directa. Estos hallazgos subrayan el valor de incorporar las perspectivas de los cuidadores en la investigación sobre comunicación en el síndrome de Down, al tiempo que destacan la importancia de una interpretación cautelosa y de la alineación con el conocimiento actual basado en la evidencia.

Introduction

People with intellectual disabilities (ID) may experience differences in intellectual functioning and adaptive behavior that affect conceptual, social, and practical domains of daily life (AAIDD, 2021). Contemporary perspectives on ID emphasize individual variability and contextual influences, and advocate for person-centered approaches that promote participation, autonomy, and quality of life across the lifespan. Effective communication is central to these processes, underpinning social relationships, access to education, and community inclusion.

While genetic and neurodevelopmental factors associated with trisomy 21 contribute to variability in learning and language outcomes (Abukhaled, Hatab, Awadhalla, & Hamdan, 2024; Robinson et al., 2024), considerable heterogeneity exists and developmental trajectories are influenced by environmental and contextual conditions (Figueroa & Darbra, 2025; Hamadelseed, Chan, Wong, & Skutella, 2023; Onnivello et al., 2022).

Communication and language development in DS is often characterized by relatively stronger receptive abilities compared to expressive language, alongside differences in speech production and morphosyntactic development (Diez-Itza, Miranda, Pérez, & Martínez, 2019; Kumin, 2017; Næss et al., 2011). Pragmatic skills and communicative intent have been described as relative strengths, although the translation of communicative intent into spoken output may still present challenges (Del Hoyo, Thurman, Harvey, Kover, & Abbeduto, 2020; Smith, Hokstad, & Næss, 2020; Zanchi, Zampini, & Panzeri, 2020).

Communicative in DS cannot be understood solely in terms of individual linguistic skills. Communication is inherently relational and context-dependent, emerging through interaction with communication partners and within specific environments. Caregivers and family members provide support for communication in daily life, particularly during childhood and adolescence, when educational and social demands increase. Research has increasingly highlighted the value of caregiver perspectives for understanding how communication difficulties are experienced in natural contexts and how strengths and challenges manifest across different settings (Robles-Bello & Sánchez-Teruel, 2022; Stone-Heaberlin, Blackburn, Hoffman, & Esbensen, 2024).

Previous research suggests that communicative success for young people with DS often varies across contexts according to the communication partner and contextual demands (Kumin, 2017). Educational and social environments may impose greater linguistic demands, including interactions with less familiar partners and reduced contextual support, whereas home environments typically provide more scaffolding through shared routines and mutual knowledge (Robles-Bello & Sánchez-Teruel, 2022). Examining caregiver perceptions of communication across these contexts can offer insights into functional communicative abilities that may not be fully captured by standardized assessments alone (Díez-Itza et al., 2019).

In addition to contextual variability, caregivers may hold diverse beliefs regarding factors that influence speech production and communication among young people with DS (Kumin, 2017). These beliefs are shaped by lived experience and may not always align with current empirical evidence. Investigating caregiver perceptions—including areas of uncertainty—can provide insight into how families interpret communication difficulties and make sense of speech-related challenges (Robles-Bello & Sánchez-Teruel, 2022; Stone-Heaberlin et al., 2024). Such information is particularly relevant for research and clinical practice, as it can support the development of shared understanding and collaborative approaches between professionals and families.

Despite extensive research on speech, language, and communication in young people with DS, relatively few studies have systematically examined caregiver perceptions of communicative difficulties across multiple domains and contexts, particularly beyond early childhood and within specific cultural settings (Finestack, O’Brien, Hyppa-Martin, & Lyrek, 2017). Most existing research has focused on direct assessments or intervention outcomes, with less attention given to how families perceive expressive, receptive, and overall communicative abilities in daily life (Næss et al., 2011). Although some studies have begun to incorporate caregiver perspectives, research examining these perceptions across multiple domains and contexts remains limited, particularly within the Spanish setting (Stone-Heaberlin et al., 2024).

The present study addresses this gap by exploring caregiver perceptions of communication difficulties in young people with DS in Spain. Using a cross-sectional survey design, the study aims to contribute to a comprehensive and context-sensitive understanding of communication in DS, foregrounding caregiver perspectives while maintaining alignment with evidence-based research. Specifically, the study sought to: (1) describe caregiver perceptions of expressive and receptive language abilities; (2) investigate perceived communication difficulties across daily contexts; (3) compare perceived difficulties in expressive language with overall communicative functioning; and (4) explore caregiver beliefs regarding factors perceived to influence speech production.

Methods

The study protocol was reviewed and approved by an institutional ethics committee (blinded for review) and was preregistered in an open-access repository (blinded for review).

Participants

Participants were recruited using a non-probabilistic convenience sampling method through organizations supporting families of young people with DS (blinded for review). These organizations facilitated dissemination of the survey. Participants were drawn from various regions across Spain, including northern, central, and southern provinces. All participants provided informed consent prior to participation and were fully informed about the nature, purpose, and scope of the study, including their right to withdraw at any time.

Inclusion criteria were: (1) being a family member (e.g., parent, sibling, aunt, grandparent or other close relative) of a young person with DS; (2) being at least 18 years old; and (3) providing informed consent. Exclusion criteria were: (1) caregivers with cognitive or communication difficulties that would prevent them from completing the survey; or (2) caregivers who were not sufficiently familiar with the daily life and needs of the young person with DS.

The final sample comprised 44 participants from different regions of Spain. Of these, 75.0% (n = 33) were women—including 59.1% mothers (n = 26), 11.4% aunts (n = 5), 2.3% a sister (n = 1), and 2.3% professionals (n = 1)—and 25.0% (n = 11) were men, comprising 18.2% fathers (n = 8), 2.3% an uncle (n = 1), and 4.5% brothers (n = 2). Most participants had completed higher education or advanced vocational training (71.7%; n = 32), and 77.3% (n = 34) reported having daily contact with the person with DS.

These participants provided information on 69 people with DS (55% male, 45% female), aged 8 to 35 years (M = 17.3; SD = 6.8). Some caregivers reported on more than one young person with DS therefore, the number of reported young people exceeds the number of respondents. Regarding educational placement, 39.1% (n = 27) attended inclusive settings with tailored support (i.e., mainstream schools with additional educational assistance), 24.6% (n = 17) were enrolled in specialized educational programs (i.e., special education schools), and 13.0% (n = 9) attended inclusive settings without additional support. The remaining 23.3% (n = 16) participated in other modalities, including occupational centers, adult transition units, and supported employment programs.

Instruments

The custom-designed survey consisted of four sections and was expected to take approximately 10 min to complete (see Appendix 1). Section 1 presented the study's objectives and provided information regarding voluntariness, anonymity, and data protection. Section 2 collected sociodemographic information from the caregiver, including place of residence, educational attainment, relationship to the young person with DS, and frequency of interaction. Section 3 gathered sociodemographic information about the young person with DS, including age, gender, household composition, current educational placement, and duration of speech and language therapy.

Finally, section 4 included 13 multiple-choice questions aligned with the study objectives. These items assessed pragmatic and communicative skills (e.g., participation in conversations, emotional expression, conversational routines, initiating interactions, turn-taking, and adapting language to context) and expressive abilities (e.g., narrative construction, articulation clarity, lexical diversity, grammatical agreement, sequencing, and spatial–temporal referencing). This section also explored preferences and enjoyment of speaking, perceived relative strengths in expressive versus receptive language, the impact of communication difficulties across contexts (home, school, and social settings), and the young person's oral vocabulary profile. Additional items evaluated perceived benefits of improved expression, caregiver beliefs regarding the influence of facial muscle tone on articulation, responses when the young person was not understood, aspects deemed important by caregivers regarding communication, and preferred leisure activities. Multiple responses were permitted, and an open-ended field allowed participants to provide additional observations.

The survey instrument was custom-designed for this study, drawing on the existing literature on communication in young people with DS. Although no formal psychometric validation or pilot testing was undertaken, the questionnaire was reviewed by all members of the research team prior to distribution to verify content relevance, clarity, and coherence with the study objectives. The exploratory and descriptive nature of the study is acknowledged, and the findings should be interpreted accordingly.

Procedure and design

This study employed a cross-sectional, descriptive design to systematically examine caregiver perceptions of communication difficulties in young people with DS. Data were collected online between April 17 and May 8, 2023. Participation was voluntary and anonymous, and all respondents provided informed consent, authorizing the exclusive use of their data for research purposes. Confidentiality was maintained, and data handling was restricted to the objectives of the study.

The survey was developed in Spanish and distributed through organizations supporting families of young people with DS across Spain. Prior to dissemination, the research team contacted these organizations to explain the study objectives and procedures and to confirm their willingness to collaborate. The organizations then shared the survey link with eligible families. No personally identifying information was collected, and all data were securely stored to ensure confidentiality.

To ensure data quality, responses were screened for completeness and consistency. Incomplete or inconsistent surveys were excluded from the final analysis. The survey was self-administered, and no additional assistance was provided during completion.

Data analysis

A descriptive analysis was conducted, providing absolute and relative frequency distributions (%) for categorical variables and measures of central tendency and dispersion for continuous variables. Descriptive comparisons between expressive and overall communicative scores were conducted using Student's t-test, with results interpreted as indicative patterns rather than evidence of clinical severity. The significance level was set at 0.05. Statistical analyses were conducted using R software (R Core Team, 2024; version 4.3.1).

Results

The analyses presented below are based on two related but distinct datasets. A total of 44 participants (primarily family members and caregivers) completed the questionnaire. These participants provided information on 69 young people with DS, with some caregivers reporting on more than one person. Accordingly, descriptive statistics concerning the participants themselves are based on n = 44, while those referring to the young people with DS are based on n = 69. A summary of the main findings corresponding to each study objective is presented in Table 1. This consolidated table highlights key descriptive results across four focal areas of analysis: perceived language abilities, communication difficulties across contexts, domain-specific challenges (expressive versus overall communicative functioning), and caregiver perceptions regarding the influence of orofacial muscle tone on articulation.

Table 1.

Caregiver-reported communication difficulties across domains.

Study domain	Variable category	Frequency (n)	Percentage (%)
1	Perceived receptive language strength	50	72.5
	Perceived equal expressive and receptive ability	17	24.6
	Perceived expressive language strength	2	2.9
2	Difficulty in at least one communication context	40	58.0
	Difficulty communicating at school	33	47.8
	Difficulty communicating with friends & family	31	44.9
	Difficulty communicating at home	13	18.8
3	Greater difficulty in expressive domain	28	63.8
	Greater difficulty in communicative domain	6	13.6
	Equal difficulty in both domains	10	22.7
4	Believes facial muscle tone affects articulation	25	36.2
	Does not believe tone affects articulation	17	24.6
	Unsure about impact of facial tone on articulation	27	39.1

Note. Objectives 1, 2, and 4 are based on caregiver reports concerning 69 people with Down syndrome, whereas Objective 3 is based on responses from 44 caregivers who completed the difficulty domain comparison.

Expressive vs. receptive language perception

To address the first objective—assessing whether families perceived greater difficulty in expressive than receptive language—a frequency distribution analysis was conducted. Among the 69 young people with DS described by participants, only 2.9% (n = 2) were perceived as having stronger expressive language skills. In contrast, 72.5% (n = 50) were reported to demonstrate greater proficiency in receptive language, while 24.6% (n = 17) were perceived to have similar abilities in both domains. These findings indicate a predominant perception of receptive language strengths relative to expressive abilities.

Communication difficulties across contexts

The second objective focused on evaluating the occurrence of communication difficulties across different settings, including school, home, and social interactions. A frequency distribution analysis revealed that 58.0% (n = 40) of the 69 young people with DS were reported to experience communication challenges in one or more contexts. Specifically, difficulties were most frequently noted at school (47.8%; n = 33) and in social settings involving friends and extended family (44.9%), with difficulties reported less commonly at home (18.8%; n = 13).

Expressive vs. communicative difficulties

To explore the third objective—whether expressive language difficulties are more pronounced than general communicative challenges—a categorical variable labeled difficulty was constructed. This variable comprised two domains: (1) the expressive domain included items related to narrating stories, pronouncing words clearly, using more nouns and adjectives than function words, frequent gender-number agreement errors between verb and subject, difficulty organizing events, and challenges with spatial and temporal references; and (2) the communicative domain included items such as participating in conversations, performing communicative rituals, frequently initiating interactions, limiting responses to the interlocutor's questions, respecting turn-taking, and adapting language to different contexts.

Negatively worded items were recoded to align with positively framed indicators. For each participant (n = 44), the number of positively rated items in each domain was summed to determine the area of greatest difficulty. Results indicated that 63.8% (n = 28) of caregivers reported greater difficulty in the expressive domain, 13.6% (n = 6) in the communicative domain, and 22.7% (n = 10) indicated equal difficulty scores across domains.

Complementary descriptive statistics for communicative and expressive variables are presented in Table 2, showing mean scores, standard deviations, and average differences between domains. A paired-samples t-test revealed that expressive difficulty scores were significantly higher than communicative scores (p < .001).

Table 2.

Comparison of caregiver-reported expressive and communicative difficulty scores.

Domain	n	M (SD)
Communicative	69	2.319 (0.915)
Expressive	69	3.435 (1.586)
Difference	69	−1.116 (1.605)

Note. M = mean; SD = standard deviation. Negative difference values indicate greater perceived difficulty in the expressive domain. Differences reflect statistically significant variation between expressive and communicative difficulty scores (p < .001).

Perceived impact of orofacial muscle tone

The final objective explored families’ perceptions of the impact of orofacial muscle tone on speech sound articulation. Among the young people with DS, 36.2% (n = 25) were perceived as being notably affected by low orofacial muscle tone, 24.6% (n = 17) were perceived as unaffected, and 39.1% (n = 27) of caregivers were uncertain about the extent of its influence.

Discussion

The present study explored caregiver perceptions of expressive, receptive, and overall communicative difficulties in young people with DS, with a focus on variability across everyday contexts. Previous research has documented heterogeneity in speech and language profiles among young people with DS across developmental stages (Hokstad & Næss, 2011; Madhavan, Lam, Etter, & Wilkinson, 2023). The age range examined reflects a developmental period in which communicative autonomy and social participation gain prominence (Buckley, Burgoyne, & Loveall, 2024). Using family-reported data aligns with prior work highlighting the value of caregiver perspectives in capturing communication as experienced in daily life (Stone-Heaberlin et al., 2024), while acknowledging the interpretive variability inherent to proxy reporting.

Caregivers most frequently perceived expressive language as more challenging than receptive language. This aligns with established profiles in young people with DS, wherein comprehension is relatively preserved, whereas verbal expression presents greater difficulty (Díez-Itza et al., 2019; Næss et al., 2011). Expressive difficulties often involve morphosyntax and phonological processing, while pragmatic abilities may remain relatively intact (Kumin, 2017; Zanchi et al., 2020). These challenges have been discussed in relation to cognitive and motor factors, including bucco-orofacial aspects (Abukhaled et al., 2024; Antonarakis et al., 2020). Despite these limitations, young people with DS often employ compensatory strategies such as gestures and pragmatic cues, demonstrating adaptive strengths in social interaction and motivation to communicate (Buckley et al., 2024; Kumin, 2017).

Caregivers reported expressive language as a salient perceived area of difficulty, providing insight into how communication challenges are experienced in everyday interactions. This observation complements previous studies highlighting persistent expressive language challenges across development, including morphosyntactic and phonological domains (Diez-Itza, Vergara, Barros, Miranda, & Martínez, 2021; Neitzel, 2024). The findings do not prescribe intervention priorities but rather illuminate the domains that caregivers consider most relevant in daily life.

Regarding communicative challenges across everyday contexts, caregivers frequently reported difficulties, particularly in school settings (47.8%) and in social interactions outside the home (44.9%). These contexts typically involve higher communicative demands, including interactions with less familiar interlocutors and reduced contextual support.

Although pragmatic abilities have often been described as a relative strength in young people with DS (Kumin, 2017), the present findings suggest that caregivers may perceive greater difficulty in more demanding or less predictable contexts. In contrast, difficulties were reported less frequently within home setting, which may reflect the supportive role of familiar communication partners, shared routines, and contextual knowledge. Overall, these observations align with perspectives emphasizing the contextual and relational nature of communication, in which effectiveness arises from interaction between the person and the environment rather than from individual abilities alone (Robles-Bello & Sánchez-Teruel, 2022; Stone-Heaberlin et al., 2024).

Previous research has described narrative-based approaches, such as storytelling and multimedia-supported retelling tasks, as relevant contexts for supporting expressive language development in young people with DS (Finestack et al., 2017; Seager, Sampson, Sin, Pagnamenta, & Stojanovik, 2022). These approaches have been shown to target aspects such as thematic coherence, event sequencing, and fluency, particularly by capitalizing on relative strengths in macrostructural organization while addressing microstructural linguistic challenges (Fernández-Urquiza, Diez-Itza, & Cortiñas, 2017; Viejo, Fernández-Urquiza, & Diez-Itza, 2025). Additionally, studies have emphasized caregiver involvement in narrative activities, highlighting the use of structured scripts, visual scaffolds, and interactive questioning as supportive strategies within everyday communicative contexts (Liao et al., 2021). From this perspective, narrative-focused activities can be understood as one example of how language-supportive interactions may be embedded in naturalistic settings, rather than as specific intervention recommendations derived from the present study (Mattie & Fanta, 2023). These examples are discussed to illustrate everyday communicative contexts rather than to propose specific intervention approaches.

When expressive and communicative domains were compared, caregivers reported a greater number of perceived difficulties in the expressive domain than in the communicative domain. Quantitative analyses indicated higher expressive difficulty scores (M = 3.435; SD = 1.586) than communicative scores (M = 2.319; SD = 0.915), indicating higher perceived expressive difficulty. These differences reflect statistically significant variation in caregiver-reported difficulty scores rather than clinical severity.

This pattern is consistent with previous findings suggesting that young people with DS may experience challenges in translating communicative intent into spoken output, despite having clear communicative goals (Del Hoyo et al., 2020; Smith et al., 2020). Caregivers in the present study frequently reported that young people continued to initiate and engage in communication attempts even when spoken expression was limited, highlighting perceived strengths in communicative motivation and social engagement. Similar patterns have been discussed in the literature as relevant factors supporting participation in social interactions (de Groot, Eijsvoogel, van Well, van Hout, & de Vries, 2024).

Caregivers in the present study reported perceived difficulties in emotional expression less frequently than other areas of communication. Regarding previous descriptions of challenges related to emotional inference and empathy in young people with DS (Garayzábal, López-Villaseñor, & Moraleda, 2018), this pattern highlights the need for careful interpretation and further investigation.

One possible explanation is that emotional communication may be supported through non-verbal means, such as gestures, facial expressions, or shared contextual understanding, reducing the perception of difficulty. Alternatively, caregivers may interpret emotional engagement and expression using broader criteria that extend beyond verbal expression alone. These interpretations underscore the complexity of assessing emotional communication based solely on caregiver report.

The high proportion of caregivers (63.8%) who identified expressive language as the primary area of perceived difficulty suggests the salience of expressive challenges within caregiver accounts of communication in young people with DS. This pattern is consistent with broader research emphasizing the central role of expressive language development across the lifespan in this population (Anagnostopoulou et al., 2021; Martínez-Cué & Dierssen, 2019). Rather than indicating specific therapeutic needs, these findings highlight the importance of situating expressive language within a broader developmental and contextual framework that considers cognitive, social, and emotional dimensions of communication. From this perspective, caregiver reports contribute to understanding how expressive difficulties are experienced in daily life, without implying intervention efficacy or prescribing particular treatment approaches.

Finally, caregiver perceptions regarding the role of orofacial muscle tone in speech sound articulation were heterogeneous. Some caregivers believed that reduced muscle tone had a meaningful impact, while a substantial proportion expressed uncertainty or did not perceive a clear association. These findings reflect variability in caregiver beliefs about factors influencing speech production, rather than providing evidence of underlying causal mechanisms. Importantly, current empirical research offers limited and inconclusive support for the effectiveness of orofacial myofunctional therapy in improving speech outcomes, as most studies have focused on oral motor function rather than speech production. Caregiver perceptions regarding orofacial muscle tone should be interpreted with caution and considered as reflecting experiential beliefs rather than indicators of treatment efficacy or clinical recommendations.

Limitations

Several limitations should be considered. First, the sample was relatively small and recruited via non-probabilistic convenience sampling. Although participants were drawn from multiple regions of Spain, the sample may not be representative of the broader population of families of young people with DS. Accordingly, the results should be interpreted as descriptive and exploratory rather than broadly generalizable.

Second, the study relied exclusively on caregiver-reported data. Although such perspectives offer insight into how communication difficulties are experienced, they do not constitute direct assessments of speech, language, or communicative abilities. Caregiver reports may be influenced by subjective interpretation or contextual factors and may not fully align with standardized clinical evaluations. Accordingly, the findings reflect perceived challenges rather than objectively measured communication abilities. They are intended to complement, rather than replace, direct clinical assessment, and should be interpreted within a broader evidence-based framework.

Third, the cross-sectional design of the study captures caregiver perceptions at a single time point, precluding the examination of developmental changes or causal relationships. Communication abilities in young people with DS may evolve across development, and caregiver perceptions are likely to shift accordingly. Longitudinal research is therefore necessary to examine how perceived communication challenges change over time.

Additionally, the wide age range of the young people with DS described in the survey (8–35 years) introduces considerable heterogeneity. Although this range reflects diverse developmental stages, the study was not designed to examine age-related differences in caregiver perceptions. Communication abilities, communicative participation, and caregiver perceptions may vary across childhood, adolescence, and adulthood; however, the present sample size did not allow for robust stratified analyses. Future research with larger samples would benefit from stratified or developmentally focused designs to examine these differences more systematically.

Finally, although the survey instrument was designed to capture a wide range of communicative behaviors, it was limited in both scope and depth. The questionnaire did not permit detailed analysis of specific linguistic domains and did not collect several relevant individual-level variables, including level of ID, speech intelligibility, and detailed history of speech-language intervention. These variables were not included in the original survey design and therefore no additional descriptive data regarding these characteristics could be incorporated retrospectively. Their absence may have influenced caregiver perceptions and should be considered an important limitation of the present study. Consequently, the findings cannot be fully contextualized within individual clinical profiles. Future research integrating caregiver-reported data with standardized assessments and clinical information would provide a more comprehensive understanding of communicative functioning in this population.

Implications for research and clinical practice

The findings offer insight into how caregivers perceive communication difficulties in young people with DS and may inform research and clinical dialog when interpreted with appropriate caution. Rather than providing guidance on specific intervention approaches, these results highlight areas caregivers frequently identify as challenging in everyday communication, thereby contributing to a more nuanced understanding of communicative functioning from a family perspective.

First, the prominence of expressive language difficulties in caregiver reports underscores the central role that spoken expression plays in how communication challenges are experienced in daily life. While this pattern should not be interpreted as evidence of clinical need or impairment severity, it suggests that expressive abilities are particularly visible and meaningful to families as they navigate interactions in educational, social, and community contexts. Acknowledging these perceptions may facilitate more collaborative discussions between professionals, families, and support systems regarding communication goals, expectations, and priorities, while remaining aligned with evidence-based practice.

Second, the contextual variability observed in caregiver reports—specifically, the higher frequency of perceived difficulties in school and social environments compared to the home—highlights the relational and situational nature of communication. These findings reinforce the importance of considering communicative context and interaction partners when discussing communication with families. Difficulties may reflect interaction between the young person, the environment, and situational communicative demands rather than stable individual characteristics. Incorporating caregiver observations about context into assessment discussions may therefore support a more ecologically valid understanding of communicative functioning.

Third, caregiver perceptions regarding emotional expression and communicative motivation point to potential strengths that may coexist with expressive language challenges. Reports indicating frequent communicative attempts, even in the presence of spoken language limitations, suggest that motivation to engage socially is often preserved. Recognizing these strengths can support a more balanced and person-centered perspective, counteracting deficit-focused narratives and fostering discussions that emphasize participation, engagement, and quality of life rather than isolated linguistic skills.

Finally, the variability and uncertainty observed in caregiver beliefs about the role of orofacial muscle tone in speech production illustrate how families may seek explanations for speech-related difficulties based on everyday experience. These perceptions highlight the importance of clear, evidence-informed communication between professionals and families, particularly when addressing widely held assumptions that are not strongly supported by empirical research. Rather than guiding intervention decisions, these findings emphasize the need for dialog distinguishing experiential beliefs from evidence-based knowledge, supporting shared understanding and informed decision-making.

From a clinical perspective, the findings highlight several areas that may be of relevance for professionals in speech, language, and communication services that support young people with DS and their families. The prominence of expressive language difficulties in caregiver accounts, particularly in school and social contexts, underscores the importance of considering environmental and relational factors when discussing communicative functioning with families. Professionals may find it useful to explore caregiver observations about context-specific challenges as a complement to formal assessment—not as a substitute for it. Additionally, the variability in caregiver beliefs regarding factors influencing speech production—including uncertainty about the role of orofacial muscle tone—highlights the need for clear, evidence-informed communication between professionals and families. Such dialog can support shared understanding, calibrate expectations, and foster collaborative goal-setting grounded in both clinical evidence and family perspectives. More broadly, integrating caregiver perspectives into assessment and intervention planning may contribute to more representative approaches to communication support, consistent with family-centered practice models.

Overall, this study contributes to the literature by foregrounding caregiver perspectives on communication in young people with DS within a specific cultural context. Future research should extend these findings by combining caregiver reports with direct, standardized assessments of speech, language, and communication. Additionally, investigating how caregiver perceptions vary according to age, contextual factors, and previous intervention experiences could provide deeper insights. Such approaches may further elucidate the ways in which family perspectives complement empirical measures in both research and clinical practice.

Conclusions

This study provides a descriptive account of caregiver perceptions regarding communication difficulties in young people with DS within the Spanish context. By focusing on family-reported experiences, the findings offer insight into how communicative challenges are perceived, rather than providing evidence of clinical need or intervention efficacy.

Caregivers most frequently perceived expressive language as an area of greater difficulty relative to receptive language abilities and general communicative functioning, though these perceptions reflect subjective family reports and should not be interpreted as objective measures of language performance. This pattern is consistent with previous descriptions of communication profiles in young people with DS, in which comprehension tends to be relatively stronger than verbal expression (Díez-Itza et al., 2019; Næss et al., 2011). These perceptions were particularly salient in school and social contexts, where communicative demands are higher and contextual support may be reduced. In contrast, difficulties were reported less often within the home environment, underscoring the role of familiar interaction partners, shared routines, and contextual knowledge in supporting successful communication.

Importantly, caregiver reports also highlighted perceived strengths alongside challenges. Many families described persistent communicative intent and motivation, even when spoken expression was limited, suggesting that social engagement and the desire to communicate are often preserved. Such observations emphasize the value of a balanced and person-centered perspective that considers both difficulties and strengths when discussing communication in young people with DS.

The variability observed in caregiver beliefs regarding factors influencing speech production, including uncertainty about the role of orofacial muscle tone, further illustrates how families seek to make sense of communication challenges based on lived experience. These perceptions should be interpreted cautiously as experiential viewpoints rather than indicators of underlying mechanisms or treatment effectiveness.

Overall, the present findings underscore the importance of incorporating caregiver perspectives into research and clinical dialog while maintaining alignment with evidence-based practice. By situating family perceptions alongside empirical knowledge, this study contributes to a context-sensitive understanding of communication in young people with DS. Future research integrating caregiver reports with direct assessments and longitudinal designs will be essential for strengthening evidence-informed practice and service planning in the field of ID, and for further clarifying how perceived communication challenges relate to developmental trajectories and everyday participation.

CRediT roles

Laura M. Cañamero: Conceptualization; formal analysis; investigation; methodology; supervision; writing – original draft preparation; writing – review and editing. Andrea del Brío: Conceptualization; formal analysis; investigation; methodology; validation. Amalia Udeanu: Conceptualization; investigation; writing – original draft preparation; writing – review and editing.

Ethical approval

The study protocol was reviewed and approved by the Ethics Committee for Research and Responsible Innovation at the University of Oviedo. All procedures were conducted in accordance with the ethical standards of the Declaration of Helsinki.

Pre-registration

The study protocol was registered in the OSF database (https://osf.io/xsqvm).

Human and animal rights and informed consent

All study-related procedures were conducted in accordance with the Declaration of Helsinki. All participants provided voluntary written informed consent prior to participation.

Use of artificial intelligence

Artificial intelligence (AI) tools were used exclusively to improve the quality of the English language in this manuscript, including grammar, spelling, and stylistic corrections. The authors carefully reviewed and edited all AI-assisted suggestions and take full responsibility for the content, interpretation, and conclusions of the manuscript. No AI tools were used for data analysis, data interpretation, or generation of scientific content.

Funding/Support

This study was funded by a predoctoral grant from the University of Oviedo (ref. PAPI-22-PF-19 to A.U.).

Role of funding source

The source of funding did not participate in the design of the study, the data collection, analysis, or interpretation, the writing of the article, or in the decision to submit it for publication.

Conflict of interest

No conflicts of interest are involved concerning the research, authorship, and publication of this study.

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request. Access will be granted to researchers subject to review of the proposed use and adherence to confidentiality agreements, in compliance with ethical guidelines.

Acknowledgments

We are deeply grateful for the collaboration and generosity of all the associations that, directly or indirectly, facilitated contact with the participating families. Without their support, this initiative would not have been possible. We extend our sincere appreciation to the families who generously shared their time and experiences. Their trust and openness provided essential insights and depth to this research. This work would not have been possible without their remarkable strength and commitment.