Neurodevelopmental disorder is a group of disabilities characterized by disruption to brain development and has its common onset in childhood (1, 2). Globally, the prevalence rates stood at: intellectual disability 0.63%, attention-deficit/hyperactivity disorder 5-11%, autism spectrum disorder (ASD) 0.7-3%, specific learning disorder 3-10%, communication disorders 1-3.42%, and motor disorders 0.76-17% (3). For children facing such challenges, a comprehensive early intervention is crucial for promoting their lifelong development as it makes use of the window of brain plasticity at an early age for maximum learning (4).

Parent-implemented intervention (PII) (or parent-mediated intervention) is an effective early intervention for children with neurodevelopmental disorders. It employs a triadic model which requires the caregivers to first learn the strategies from clinical professionals, then offer training to their children at home (5). It is not designed to replace but complement the clinician-implemented treatment so that children can have more tailored learning opportunities (6, 7). Research has shown that PIIs are useful in promoting children’s adaptive behaviors, social communication skills, motor skills, cognitive skills and learning abilities while reducing maladaptive behaviors (8–10). With caregivers being equipped with the specialized knowledge and skills to care for their children, they too benefit from PIIs. Being empowered, their parental stress is alleviated, and their confidence is boosted (11, 12). PIIs can also create positive impacts on families when other caregivers are willing to learn from the trained-caregivers and put the new skills into practice (13, 14). Hence, PIIs have strategic values of strengthening the functioning of the children, parents as well as families. Scientific evidence reveals that although gene abnormalities and congenital brain lesions contribute to neurodevelopmental problems, environment and experience also play a role in shaping the brain development thus altering its trajectories (15). PIIs are therefore uniquely powerful as they nurture the natural family environment which is conducive to healthy child development (16).

With the effectiveness of PIIs being validated, more qualitative studies were conducted in recent decades to explore why and how PIIs worked. These studies were on three domains: (1) Documenting the outcomes of PIIs, (2) identifying barriers and facilitators, and (3) investigating the change processes in the interventions. On the examination of outcomes, the existing qualitative research has found that PIIs are useful in helping the caregivers to make sense of and accept their children’s atypical development, equip them with new parenting strategies, strengthen parent-child relationship, promote children’s development, and support family members to acquire new caring skills (17–19). On the barriers and facilitators, research has showed that program design (e.g. the pace of learning, the possibility of integrating the skills into daily routines, and the match between the program and the participants), trainers’ competencies and relationships with the parents, parents’ commitment and self-efficacy, and logistics (e.g. time, location, and availability of childcare) are factors affecting caregivers’ participation in the PII training and their application of skills at home (17, 19–22). On the change processes, research has shared a similar three-step process: (1) The caregivers are empowered and experienced an increase in self-efficacy, (2) they practice applying the skills, then (3) they witness the changes in their children (23–25).

While the existing qualitative studies have provided rich accounts of the lived experiences of PII participants, we still know little about the internal changes of caregivers. For example, Holtrop et al. set out to examine the process of change, and they identified three steps: Attempt, Appraise, and Apply. These steps described the actions the parents took to apply their learned knowledge and skills, yet this action-oriented process did not unveil the inner experiences of caregivers (23). Mejia et al. sought to examine the changing mechanisms of PIIs (24). They identified three types of changes—psychological mechanisms behind changes, behavioral changes in the parent, and changes in the children—and weaved them into a change model with hypothetical causal relationships. This work drew new light to the psychological mechanism of caregivers; however, as psychological changes were not the only focus of this study, the inner experiences they captured were limited to self-efficacy and emotional regulation. Frost and Ingersoll purported to delineate the theory of change, and they identified different pathways describing how parents reacted to different ingredients of the intervention (25). An example of these pathways was “Collaborative goal setting > Parent empowerment, self-efficacy, and motivation > Caregiver practice outside of session > Child skill development”. As explained by the authors, the goal of this study was to find out how learning and motivation supported the caregivers’ implementation of skills. Hence, it was designed to investigate how motivational factors elicited desirable actions rather than openly exploring the inner changes of PII participants. Thus far, the literature has only painted a broad stroke description that parents are likely to experience an increase in motivation, confidence and skills, and there has not yet been a study dedicated to following into the caregivers’ inner experiences of changes.

In this research, we employed the qualitative research approach to explore the lived experiences of caregivers in PIIs. We asked our caregiver respondents to describe the changes in themselves, their children and their families, and we focused the discussion particularly on their breakthroughs that propelled positive outcomes. This emphasis is important because PII, as an intervention that has adopted an experiential approach to adult learning, requires caregivers to move beyond grasping the skills and concepts to experiencing transformation through active experimentation and reflective observation (26).

Breakthrough also marks a time of paradigm shift when caregivers overcome their obstacles, allow a new belief to take root or chart a new course of actions. Underscoring breakthroughs opens the doors for us to apprehend their concerns, struggles and needs. In PIIs, the caregiver-trainees are the main interventionists as well as the primary caregivers who have their personal and familial responsibilities, expectations and challenges. The effectiveness of PIIs is therefore determined not only by the competencies in learning and applying of skills, but also the capacities, beliefs, habits and wellbeing of caregivers. Through discussing how they let go of their old beliefs and practices to adopt the new ones, we join the caregivers into their stories to apprehend the dilemmas they faced and identify factors affecting their acquisition and implementation of skills. The insights on the change mechanisms will help inform the theory of change in PIIs.

When the existing literature gauged the success of PIIs mainly through a methodological lens—the adherence to protocol, the quality of intervention delivery and the level of dosage, this research sheds light on how the capacities, beliefs and wellbeing of caregivers shape the processes and outcomes of the interventions (5).

As caregivers’ experiences are of concern, we need to situate our understanding in the cultural context of Hong Kong, China to make sense of the local experiences. Previous research has showed that although Hong Kong has a relatively well-developed medical system, the caregivers of children with neurodevelopmental disorders are still encountering many challenges in help seeking. The private consultations are expensive and there are no standardized intervention models (27). The public services are constantly under the pressure of overwhelming demands and the lack of physical doctors and civil service staff, some children need to wait for a few months to over a year for their assessments at the Child Assessment Centers of the Department of Health (28–30).

The household sizes are generally small in Hong Kong with over 90% of them had 4 persons or less in 2021 (31). In this living environment, the caregiving responsibility sometimes fall mainly on one caregiver, while some have more supportive spouses and grandparents to share the tasks (14). Employing domestic helpers to support household management and childcare is common as around one-third of the households with children aged 12 or below were hiring foreign domestic helpers in 2021 (32).

Aside from the challenges in daily caregiving, the caregivers are also facing tremendous stress from different fronts. They worry for their children’s academic performance and future development, some of them are ashamed to share the news of their child’s diagnosis with other family members, some blame themselves for their children’s disability, and many have experienced stigma from the society (33–35).

From interacting with the data, we generated three overarching themes describing the breakthroughs the caregivers experienced which propelled positive changes in themselves and in their children, they were: (1) Self-care for the wellbeing of self and the child, (2) home setup for parent-child joint engagement and routine building, and (3) discernment of the window to intervene. Each overarching theme contained two to three subthemes.

This qualitative study aims to explore the transformation processes of caregivers in the PIIs, and it focuses especially on their breakthroughs. From the sharing of the caregiver-participants in the focus groups, we found three major changes: (1) Self-care for the wellbeing of self and the child, (2) home set-up for parent-child joint engagement and routine building, and (3) discernment of the window to intervene. As reflected by the respondents, these breakthroughs addressed their inner hurdles and helped create positive outcomes for the caregivers and their children.

The caregivers participated in the PII with the hope to acquire some strategies to care for and promote the development of their children who were experiencing developmental delays and disabilities. Many of them were suspected or diagnosed with ASD. To their surprise, the caregivers found that the course was beyond their expectations as they also learnt about self-care. Many caregivers reported that they were used to be completely occupied by the needs of their children, and they were unaware of the exhaustion that they were experiencing. Unlike the original WHO-CST, this localized course emphasized more on self-care with trainers teaching and practicing meditation with the caregivers in the group sessions. The caregiver-respondents found this teaching very helpful. Through paying attention to and getting in touch with their own emotions and physical conditions, they became aware of their own stress, the depletion they were feeling, and their suppressed personal identity. This realization shed light on their own psychological needs, and they became aware of the necessity of taking good care of themselves. They discovered that through attending to their own needs, they were indeed cultivating strengths and capacities to care for their children.

When the caregivers attended to their own emotions, they also became more attuned to the emotional fluctuations in themselves and in their children. With this new lens, they recognized the influences of their own emotions on their children and learnt that both positive and negative emotions were contagious. The insights motivated caregivers to create more positive experiences for their children and prevent themselves from imminent emotional outbursts. Although they were not able to hold their frustration in place every time, they found that they had gradual improvement in their emotion management and they could seek help from other adults when their negative emotions were heightened. In practicing self-care, some caregivers also reclaimed their own personal identities and constructed a new positive self-image.

Self-care was a breakthrough shared among the caregiver-respondents as this met their desperate needs. Caring for a child with special needs was already a difficult task in Hong Kong, yet some of the respondents shared that they were assumed to be the primary caregivers for their children in their families and they were completely consumed by the responsibility and daily demands. Their challenges were further topped by the misunderstanding and stigmas from their family members and the society, and this made them particularly lonely and burnt out. Research in Hong Kong has reveal that parents who have their children being diagnosed with ASD can feel helpless, shocked, confused and lonely, some are too ashamed even to disclose the diagnosis to their family members, and some nternalize the stigma and become upset with their affiliations with their children (27, 34). In our earlier paper, we also discussed the dynamics in families with children with neurodevelopmental disorders, while some family members were committed to offer support, some chose to distant themselves from the caring responsibilities (14). With this PII upholding self-care, they were offered the opportunities to reflect on their status, needs and directions, and made changes for sustainable caregiving and personal development.

Research has supported that self-compassion is essential for healthy caregiving (44). For caregivers who embrace self-compassion, they are more likely to avoid enmeshment and enjoy higher autonomy while building closer and satisfying relationships. Amid hardship, self-compassion also offers them anchors and self-soothing.

With many PIIs aim to teach children self-care skills, fewer PIIs are designed to teach caregivers the self-care that adults need (45, 46). As there has been a call for the clinical professionals and academics to attend to the self-care needs of caregivers (19), this study responds by documenting how the learning and practicing of self-care transform the lives of caregivers. With an emphasis on self-care, this study highlights the needs to consider the mental and physical health of caregivers in PIIs and to include self-care as an intervention component and an outcome indicator. When PIIs emphasize the interventionist role of caregivers and tend to monitor their performance, this research serves as one of the pioneers to advocate for the wellbeing of caregivers. As healthcare professionals and researchers are becoming more aware of the burdens of caregivers and the necessity for cultivating resilience in them, PIIs are believed to be a strategic tool to serve both the caregivers and the children with special needs (47).

Another breakthrough shared by the caregivers was changing the home setup. In the PII, the caregivers learnt that the seating arrangement at home would affect the parent-child interactions. When they were at the eye-level of their children, the young would have more opportunities to pay attention to the adults’ facial expressions, and this promoted parent-child engagement thus the child’s learning. The caregivers also learnt to observe the comfort level of both parties to sustain the joint engagement. They reported that after rearranging their home setup, the children became more focused, engaged and enjoyed the parent-child time more. The respondents also noticed that setting a dedicated space for parent-child interactions served as an environmental cue to remind them of the playtime, and this helped build their play routine. This cue was so effective that when some children saw their caregivers approaching the small table for playtime, they would proactively come to join in. While research have documented that environmental arrangement is a common strategy taught in PIIs for promoting the child’s willingness and likelihood to communicate, these studies have not yet explored its effects from the parents’ perspectives (48, 49). This research thus fills this gap by showcasing that from the caregivers’ experiences, the home setup not only facilitates communication, but it also serves as a visual reminder for building play routines.

The effectiveness of using environmental cues to shape and maintain health-related behaviors such as healthy lifestyle, eating habits and smoking habits have been demonstrated in previous research (50–52). The researchers find that when the environment is set up in ways that promote the desirable behaviors, the visual cues can propel people to choose what is hinted, hence people need to rely less on their will power and self-regulation to restrain themselves from doing what is undesirable. In this study, our novelty lies in offering evidence to show that environmental cues also works for building caregiver-child play routines thus relationships.

Discernment of the window for intervention was a breakthrough mentioned and cherished most by the caregiver-respondents. In the course, the caregivers were taught to observe the behaviors, emotions, interests and preferences of their children, and responded to them with a child-centered approach. Echoing other studies (6, 18, 19)., the feedback from trainers were found to be conducive for caregivers’ learning With the trainers providing feedback to the caregivers’ videos of playtime with their children, the caregivers learnt to observe the effectiveness of their existing parenting approaches and gradually adjusted their pace to align with their children’s. They realized that the best teaching approach was not to inculcate ideas into their children’s mind for this might overwhelm them. Instead, they needed to identify their children’s current language and cognitive capabilities and teach in ways that matched their current levels. Given that the feedback from trainers on actual practice has been found useful across studies (6, 18, 19), we encourage PIIs to include home visitations so that the trainers can offer practical support in environmental setup and in parent-child interactions.

Caregivers also learnt to follow into the children’s world by observing and mirroring the children’s play methods. They needed not find myriads play methods to teach different skills, but they could add little elements into the same activity to expose children to new learning. The caregivers felt more relaxed when they knew when to intervene and when to take a break. Shared with other studies that examine the effectiveness of the skills of imitation and mirroring (53, 54), this study reaffirms the values of synchrony in promoting parent-child interactions.

Through practicing this child-centered parenting approach, the caregivers found themselves having more empathy towards their children, and they developed more understanding about the children’s behaviors and emotions. When empathy was mentioned in the PII literature, it was usually in the context of the empathetic approach to engage caregivers or the cultivation of empathy in children (18, 55, 56). This study documents the growing of empathy in caregivers towards their children and how this affects the caregivers’ parenting.

This study offers unique values in understanding the critical transformation of caregivers in PII. Through examining the three breakthroughs, we highlight that the condition of caregivers—their wellbeing, capacities, concerns, needs, struggles, values and habits—play an important role in shaping their learning and applications of skills. Hence, we underscore the importance of recognizing where the caregivers are at and call for a more client-centered approach to PIIs.

This research, however, is not without limitations. We are aware that the sample size used in this research was rather small which contained only 21 caregiver-participants. Eighteen of them were mothers, hence the voices of fathers and other caregivers were underrepresented. This sample was drawn purely from an Asian community and the lived experiences were inevitably influenced by the local cultures. These characteristics of the sample inevitably constrain the generalizability of the findings. More qualitative research is to be conducted to explore the lived experiences of other caregiver groups in other settings.

In our data collection sessions, we heard some caregivers sharing how they applied the skills learnt in the localized WHO-CST on their children with typical development. This points to the possibility that the skills in PIIs can have a wider utility and greater impacts beyond its original target population. This can possibly be a future research direction.

This study serves to provide insights into the theory of change of PII by exploring the transformation processes of caregivers in a PII. Through focusing on their breakthroughs, it revealed their inner struggles and documented the key changes experienced and cherished by the caregivers. By zooming into the lived experiences of caregivers, it underscores the needs of considering the conditions, wellbeing and experiences of caregivers in PIIs for these factors directly affected the effectiveness and sustainability of the interventions. This study also encourages clinical professionals to include self-care techniques for caregivers as a core component in PIIs to strengthen their capacities and promote their wellbeing.