Introduction

Children with developmental delays (DD) constitute a broad and heterogenous group affected by a wide range of adverse health conditions. These children may exhibit delays, regressions, or losses in two or more developmental domains, including gross and fine motor skills, speech and language, cognition, social and personal skills, and activities of daily living [1,2]. They frequently encounter sensory impairments, such as hearing and vision loss, along with conditions such as epilepsy, cerebral palsy, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability, or various learning disorders [2,3].

The early years of life represent a critical window for achieving key developmental milestones [4], making timely diagnosis and intervention essential. When DD is identified early and followed by an appropriate intervention, children are more likely to enhance their developmental potential, functional performance, and overall quality of life, while fostering their opportunities for social participation [5].Although caring for children with DD can bring positive familial outcomes [6] such as enhanced family cohesion, personal development, and increased joy [7], research has also consistently documented the chronic stressors that parents often face. These stressors may include high caregiving demands [8–10], social stigma [10,11], sleep deprivation [10,11], limited social contact [10–12], disruptions to work schedule [10] and family responsibilities [10,11], and financial burden of treatment [10,11]. Each of these factors can contribute to deteriorating mental health in parents [7,9–13].

Literature focused on the challenges experienced by parents of children with DD has highlighted that the burden of caregiving frequently leads to increased levels of stress [10–12,14,15], anxiety [7,10,11,14,16] and depression [7,10–12]. Several studies have identified major sources of parental distress, particularly concerns about their child’s health and developmental prognosis [10,17], often embedded in daily routines involving recurrent therapies, assessments, and specialised educational support [10,18]. This scenario usually becomes worse because parents tend to prioritise caregiving responsibilities over personal needs, eventually leading to an increased opportunity for occupational imbalance marked by the loss of meaningful activities [19–22], reduced social interaction and support, and inadequate self-care further exacerbating their psychological distress [10,23]. Depression, in particular, frequently co-occurs with stress and anxiety in this population [7,10]. A meta-analysis by Scherer et al. (2019), which included 3303 parents of children with DD and 9519 parents of children without DD across 11 countries, found that approximately one-third (31%) of the parents with children with DD reported elevated levels of depressive symptoms [7].These findings underscore the magnitude of the caregiving burden and highlight the need to better understand the risks factors associated with the parenting role in such context and their impact on occupational performance, understood as the ability to engage in meaningful and necessary daily activities that support health, well-being, and social participation [24].

A significant shift in family roles and increased caregiving demands may constitute two of the most challenging and interconnected experiences for parents of children with DD. These circumstances often disrupt established family dynamics and parental roles, intensifying caregiving responsibilities and requiring parents to juggle additional familial and social commitments [10,25]. These increased demands can reduce the time available for meaningful activities, which are defined as everyday activities undertaken individually that hold intrinsic meaning and purpose, encompassing necessary, desired, and expected actions [19,26]. A reduction or withdrawal of such activities may negatively affect occupational balance, understood as the perception of having a satisfactory and varied engagement in meaningful activities throughout daily life [27,28]. Notably, these burdens are often disproportionately borne by women, who typically assume the primary caregiving role within families. This unequal distribution of care has been linked to heightened psychological distress, including anxiety and depression among mothers of children with DD [29–31]. Additionally, it may further aggravate occupational imbalance by limiting time for rest, social participation, and self-care [32].

Although several studies have documented perceived disruptions in occupational balance as a detrimental consequence of informal caregiving [21,33–35], there remains a lack of empirical research supporting the hypothesis that occupational balance might impact on life satisfaction, well-being and quality of life of parents of children with DD [19,22,34,36].

To our knowledge, no scientific studies have specifically examined the interplay between psychological distress, well-being, and occupational performance factors—such as engagement in meaningful activities and occupational balance—and their impact on the health of parents of children with DD. This gap in evidence is compounded by the lack of validated instruments to assess these constructs in this population, which limits the ability to monitor caregiver burden and guide tailored interventions. Consequently, the development of strategies that address parents’ occupational needs and promote occupational balance remains limited. In response, identifying and co-designing supportive actions through participatory research becomes essential to generate meaningful interventions that strengthen parents’ occupational balance and well-being, ultimately contributing to healthier developmental environments for their children.

Our project represents the first attempt in Spain to comprehensively explore these associations. The findings may inform the development of family-centred policies and practices in early intervention centres, supporting not only children but also addressing the occupational needs of their parents. Enhancing parental satisfaction with daily activities and promoting occupational balance could contribute to improved emotional well-being.

Therefore, the main aim of this study is to examine mental health, engagement in meaningful activities, and occupational balance among parents of children with DD. Specifically, we aim to:

1. Evaluate the psychometric properties of the Spanish versions of the Occupational Balance Questionnaire (OBQ-E) [37] and the Engagement in Meaningful Activities Survey (EMAS) [38] in parents of children with DD.
2. Describe perceived symptoms of stress, anxiety and depression, as well as psychological well-being in this population.
3. Assess levels of engagement in meaningful activities and occupational balance.
4. Identify the most frequently identified meaningful activities by parents of children with DD.
5. Explore factors sociodemographic, lifestyle, and contextual associated with stress, anxiety, depression, psychological well-being, engagement in meaningful activities, and occupational balance.
6. Examine the association between engagement in meaningful activities and occupational balance and mental health outcomes (anxiety, depression, stress, and psychological well-being).
7. Identify the needs and potential actions, through a participatory process, to improve involvement in meaningful activities and occupational balance among these parents.

Materials and methods

Study measures

Sociodemographic, health, and lifestyle data will be collected using a combination of ad hoc questionnaires and standardised instruments. The questionnaires were adapted from those used in the InProS study (https://inteo.umh.es/inpros/) and complemented with validated measures. A summary of the variables and instruments used in the EQo-Mental project is presented in Table 1.

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Table 1. Summary of the data collection for the EQo-Mental project.

https://doi.org/10.1371/journal.pone.0337542.t001

Discussion

This mixed-method study was designed to examine the association between mental health, occupational balance, and engagement in meaningful activities among parents of children with DD, while also identifying their perceived needs and potential strategies to enhance occupational participation. To our knowledge, this is the first time a study applies both an epidemiological and participatory approach to bridge the knowledge gap between parental mental health and occupational participation in the context of caregiving. Unlike previous research, often limited to emotional or psychological impacts, this study offers an integrated framework for comprehensively understanding how caregiving demands affect parental engagement in meaningful occupations. Moreover, we aim for the findings to inform early intervention practices through an innovative model for family-centred research—one that not only supports developmental care of children with DD, but also actively incorporates parents’ voices and addresses their occupational needs.

In Spain, family-centred practices within early intervention, although formally recognised and recommended for more than two decades [54,55], remains inconsistently implemented. Traditional early intervention approaches continue to prioritise the child’s needs, often relegating families to a peripheral role [56–59]. Despite recent efforts to embed the family-centred model into service delivery [60–62], research among professionals highlights persistent weaknesses and challenges in operationalising this paradigm shift [57–59,61,62]. In parallel, research exploring the families’ own perspectives remains limited [58,63–68], and few studies have adopted a participation-based approach to understand the burden of caregiving, the occupational needs of parents, and their potential to play an active role in promoting parent–child interaction within early intervention services [66,68].

In response to this critical research and practice gap, our study places parental occupational participation and mental health at the core of inquiry. Rather than framing meaningful activities and occupational balance merely as outcomes, we conceptualise them as core determinants of well-being, essential for understanding how caregiving demands reshape the everyday lives of parents—particularly through the disruption, substitution, or loss of meaningful occupations. This occupational perspective aligns with the foundational principles of occupational therapy, which emphasise the interplay between occupation, health, and participation across life contexts [69].

A major limitation in current research on parents of children with DD is the lack of mixed-methods approaches that integrate both subjective experiences and population-level insights. Mixed-method designs offer a powerful strategy for addressing complex phenomena in health sciences, particularly in fields like occupational therapy and caregiving, where lived experience, personal meaning, and contextual barriers are central to understanding health disparities and inequities [70]. Their main advantage lies in combining numerical patterns with rich, contextualised narratives, thereby providing a deeper, more holistic understanding of the phenomena under study [70]. This approach is particularly valuable in fields such occupational therapy research and caregiving where lived experience, subjective meaning, and contextual factors are central to understanding the impact of caregiving roles. At the same time, embedding an epidemiological lens within this framework enables the identification of risk factors, measurable patterns, and social determinants of occupational imbalance and mental health—enhancing the generalisability and policy relevance of findings. Building on this methodological approach, the EQo-Mental project presents several additional strengths. First, it combines a robust quantitative component—including a large, diverse sample (n ≈ 700) and the use of validated instruments—with a novel dual-phase qualitative strategy. This includes participatory techniques with parents and a multi-stakeholder focus group, analysed through reflexive thematic analysis to ensure that parents’ voices are not only heard but also translated into co-designed proposals for action. The validation of the OBQ-E and EMAS in this population further strengthens the study’s methodological contribution by providing culturally adapted tools for assessing occupational determinants of health.

Interestingly, this project also contributes to expanding the research scope of occupational therapy into community-centred and population-based practice [71]. This perspective not only supports family-centred care from a rights-based approach, but also reflects the transformative potential of occupational therapy when situated within a public health framework [72]. By mapping occupational needs and promoting co-constructed solutions with families and professionals, EQo-Mental fosters a platform for policy dialogue and participatory action—contributing to the long-overdue integration of parental needs into early intervention services and aligning with international efforts to design health systems “with” and not just “for” the community [71,72].

Nevertheless, this study has several limitations that should be acknowledged. First, the use of self-reported questionnaires for assessing mental health, occupational balance, and engagement in meaningful activities may introduce biases such as social desirability or recall bias. Although we selected validated instruments to mitigate these risks, it is possible that participants’ responses reflect perceived expectations rather than objective experiences. Second, the cross-sectional nature of the main quantitative analyses limits the ability to establish causal relationships between caregiving demands, occupational participation, and mental health outcomes. However, the findings will provide valuable insights into associations and risk factors, offering a foundation for designing future longitudinal studies to confirm directionality and temporal associations. Third, although the project employs a large and diverse sample from early intervention centres in the province of Alicante, the regional focus may restrict the generalisability of the findings to other populations with different socio-cultural or health system contexts. Since early intervention practices are managed at the regional level in Spain, future research should aim to replicate the study in other regions and settings to strengthen external validity. Fourth, while the qualitative component uses a rigorous reflexive thematic analysis, it inherently involves a level of subjectivity in data interpretation. The research team has implemented measures to enhance credibility—such as multiple coders, reflexivity practices, and triangulation—but some degree of interpretative bias remains inevitable in qualitative research. Finally, sustaining stakeholder engagement throughout the participatory process may pose challenges, particularly given time constraints and differing professional and parental priorities. To address this, efforts will be made to maintain open communication, offer flexible participation options, and ensure that stakeholders see clear value in their involvement.

Conclusions

This study offers an innovative epidemiological and participatory approach to the investigation of occupational balance, engagement in meaningful activities, and mental health in parents of children with DD. Building on available evidence, the EQo-Mental project attempts to address critical gaps in the understanding of how caregiving demands reshape parental occupational participation and impact well-being.

Looking ahead, the findings from this study may serve as a foundation for prospective longitudinal research to confirm causal pathways between caregiving demands and health outcomes. Furthermore, the participatory methods developed for this study could be adapted to explore the occupational needs of other caregiver populations, such as caregivers of adults with disabilities or chronic illnesses, and across diverse cultural and healthcare settings.

Ultimately, by identifying and addressing the occupational needs of parents of children with DD, this project aspires to contribute to the design of future interventions that promote occupational balance and psychological well-being, strengthen family engagement and resilience, and foster healthier developmental environments for children with DD. This approach supports the implementation of more effective and truly family-centred practices within early intervention services.

Acknowledgments

The authors would like to thank all the participants involved in the EQo-Mental project, as well as the institutions and professionals who contributed to the study recruitment, including CAT ADA Almoradí, Fundación Salud Infantil (CDIAT I, II and CREA in Elche and CDIAT III in Crevillente), Asociación ANDA Alicante, Anda CONMiGO Alicante, FUNREDIS Elda, APCA CAT Infanta Elena Onil, Asociación LUDAI Denia, CDIAT Callosa de Segura, CAT Casa San José Novelda, APSA CDIAT San Vicente, APADIS CDIAT Villena, MONDALÚA Alicante, adiTEA Alicante, Senti2 Atención Infantil San Juan de Alicante, Unidad Funcional de la Mano Alicante, Ikigai Espacio Terapéutico Alicante, LUNA espacio de desarrollo infantil Alicante, DEEA Alicante, CDIAT Pilar de la Horadada, Neural Kids Denia, ADIS Vega Baja Bigastro, CelesTEA Alicante, Boomerang Espacio Terapéutico Alicante, CAT Orihuela, Entre Burbujas Alicante, Inteligencia Activa Aspe, Centro IDEAT Mutxamel.

We would like to express our sincere gratitude to the professionals who contributed to the recruitment of participants: Lorena Chaves del Amo, Josue Esteve Esteban, Encarni Serrano Reina, Cristina Manresa, Alicia Fernández Álvarez, Beatriz Fernández Filloy, Carla Martínez Gil, Patricia del Saz Rubio, Empar Casaña Escriche, Paula Noce, Rocío Muñoz Sánchez, and Irene Campos Sánchez.