Understanding the Experiences of Middle-Aged Filipino Parents of Children with Undiagnosed Neurodevelopmental Conditions in Rural Northern Philippines

Jefferson G. Manaois^1,2, Maria Lourdes L. Chavez¹

¹Miriam College, Katipunan Avenue, Loyola Heights, Quezon City, Philippines

²San Guillermo Vocational and Industrial High School, SDO Isabela, Philippines

https://orcid.org/0009-0007-0675-8225

https://orcid.org/0000-0001-7513-1695

ABSTRACT: This qualitative study investigated the everyday realities of six Filipino couples in the Northern Philippines caring for children with undiagnosed neurodevelopmental conditions (NDCs).  Employing in-depth interviews and Giorgi’s phenomenological analysis, the study revealed two dominant themes.  “Navigating the Demands of Developmental Caregiving” reveals a nuanced interplay of challenges that these parents face daily. The exploration of how navigating an ambiguous diagnostic landscape filled with significant socioeconomic and geographic limitations shapes parental roles, caregiving responsibilities, and the development of coping mechanisms. The second theme, “Finding Meaning in the Face of Uncertainty,” highlighted the adaptive coping strategies employed, specifically fostering strong family bonds and seeking solace from God. Results demonstrate an urgent need to create culturally fit interventions, improved diagnostic services, and comprehensive community support programs that cater to the unique needs of these middle adulthood couples (i.e., the competing demands from different areas of their life: their established careers, potential caregiving for aging parents, and the ongoing responsibilities of raising children). Future research should evaluate the long-term effects of these interventions and explore the effectiveness of different support models.

KEYWORDS: Middle adulthood, Filipino parents, Undiagnosed neurodevelopmental conditions (NDCs), Rural context

• INTRODUCTION

The DSM-5 characterizes neurodevelopmental conditions (NDCs) as disorders that show impairments in adaptive functioning in at least one domain (social, academic, personal, or occupational) that begin to emerge during childhood (American Psychiatric Association, 2013). Some examples are autism spectrum disorder (ASD), specific learning disorders, communication disorders, attention deficit hyperactivity disorder (ADHD), intellectual disability, and neurodevelopmental motor disorders (Vromen, 2024). Neurodevelopmental disorders were seen in 2-4% of the global population last 2022 (Sabariego-Navarro et al., 2022).

In the Philippines, approximately 1.6 million children are identified as having disabilities (United Nations Children’s Fund, 2022). Yet, families in the rural areas have difficulty accessing specialists or professional healthcare providers, leading to delays in diagnosis or, in some cases, no diagnosis at all (Jo et al., 2015). This scenario is more often worse in low-to-middle-income countries like the Philippines, where developmental disabilities often remain neglected, resulting in even poorer incidence and referral rates (Reyes and Herrin, 2009).  Consequently, statistical data on these disabilities are limited due to insufficient case reporting (Lauengco, 2023).

Many parents hesitate to seek social and medical support, even though this assistance is crucial for their children’s development, particularly in cases of undiagnosed conditions (Macnamara, 2014). In these situations, parents often become experts, navigators, and advocates for their children (Bauskis et al., 2022), but they frequently lack the necessary knowledge to effectively manage their children’s needs. While some use social media to gain more information on caregiving, this resource is inadequate to understand their child’s condition (Deuitch et al., 2021).

Furthermore, the social stigma and self-stigma surrounding mental illness significantly hinder Filipinos from seeking help. Social stigma stems from the negative perception that seeking care will cause damage to their family’s reputation, creating fears of isolation, prejudice, and condemnation. On the other hand, self-stigma stems from individuals’ fears of humiliation, shame, ridicule, and negative judgment (Vahabi and Wong, 2017). Together, these factors are a strong hindrance to accessing the support and resources necessary for addressing developmental disabilities.

This study is about the experiences of parents with children with NDCs. It focuses on parents in the middle adulthood stage (ages 40 to 65 years) as parenting in midlife is understudied compared to childhood and older adulthood (Lachman, 2015). The lifespan developmental perspective says that midlife represents a significant portion of a person’s life. During this time, family dynamics—how family members interact with each other—are particularly important. Parents in midlife are often influenced by societal norms and expectations regarding how they should behave and what roles they should fulfill. Because midlife parenting is influenced by changing social conditions, understanding the experiences of these parents as they care for their children is crucial (Cohen, 2015). Furthermore, this parent-child relationship is influential in the child’s development. Recent efforts in relational health child development emphasize the role of the parents, the child, and the context in the development and maintenance of this relationship (Frosch et al., 2019).  Essentially, the study aims to shed light on an area of parenting where little is known, and the unique challenges faced by these parents today, specifically on the lived experiences of middle-aged Filipino parents in a rural setting whose children have undiagnosed NDCs. It intends to answer the following questions:

1. What are the lived experiences of middle-adult Filipino parents caring for children with undiagnosed neurodevelopmental conditions (NDCs) in rural settings?
2. How do middle-aged Filipino parents in rural communities make sense of their experiences while caring for a child with an undiagnosed neurodevelopmental condition (NDCs)?
3. What essential themes emerge from the lived experiences of middle adulthood Filipino parents caring for children with undiagnosed neurodevelopmental conditions (NDCs) in rural settings?

2.0. METHODOLOGY

Research Design. This study adopted a qualitative research approach to explore the multifaceted aspects of life, such as emotions, thoughts, perceptions, and social interactions, in the context of parenting children with undiagnosed neurodevelopmental conditions (NDCs). The aim was to uncover both the unique and shared experiences of these parents, fostering deeper connections among their narratives. To achieve this, Giorgi’s (2007) descriptive phenomenology was employed. Data was collected through interviews guided by a semi-structured questionnaire, reviewed by an expert, designed to elicit insights into the participants’ parenting and life experiences concerning the context. Follow-up questions were based on the responses given during the interview.

Participants and sampling techniques. The number of participants in this study is within the recommendations of Creswell (2018) for qualitative research. Purposeful and snowball sampling gathered six couples (six mothers and six fathers). Referrals came from contacted barangay officials and parents from the locale of the study. In the Philippines, the barangay is a small territorial and administrative neighborhood, which is also the most local level of government. The inclusion criteria were a.) Biological parents of children with undiagnosed NDC covering ASD, ADHD, intellectual disability, and learning disability; b.) parents should be in their middle adulthood stage particularly within ages 40 to 65; c.) the family lives in rural Northern Luzon area; d.) the child was initially referred to a medical practitioner or a general pediatrician and received a clinical impression of NDC and for further assessment, but no formal assessment was done as of the date of the interview and; e.) manifestations of an NDC have been verified by a licensed clinical psychologist. On the other hand, the exclusion criteria were a.) parents with an official diagnosis of their child by a developmental pediatrician or other related developmental specialist; b.) parents who have children diagnosed with NDC but live outside the Luzon area; c) parents who have children diagnosed with NDC within Luzon but not living in the rural area.

Table 1. Sociodemographic profiles of the participants

Data collection. A preliminary conversation with the participants was conducted as part of rapport-building and to ensure they were within the inclusion criteria. Informed consent was then secured before the actual interview, together with the information that (1) their identity would be kept anonymous, and their data would be held with confidentiality, and (2) they could withdraw their consent and participation at any given time during the study. The researcher made sure that those who agreed to participate understood the purpose of the study. Interviews, which lasted for 60 to 90 minutes, were conducted in a private and quiet space within the participants’ houses because this was where they felt more comfortable.  The interviews were recorded, with consent, and were transcribed thereafter.

Data Analysis Procedure. This study employed Giorgi’s (Giorgi, 2009,1985; Giorgi & Giorgi, 2003) phenomenological method to analyze data.  The analysis proceeded in five phases: 1) Bracketing: Before beginning the analysis, engagement in a process of reflective journaling was done to identify preconceptions and biases regarding parenting, neurodevelopmental conditions, and the Filipino cultural context. To minimize the influence on the interpretation of the participants’ accounts, reflecting on personal experiences and the understanding of these topics was done. The reflections were documented in a separate file to maintain transparency. 2) Naive Reading: Each interview transcript was read several times without attempting any formal analysis. This allowed the researcher to generate an overall sense of the tone and emotion expressed, as well as each narrative, as a whole. Initial impressions and particularly impactful phrases were taken using marginal notes. 3) Meaning Unit Identification:  In subsequent readings, meaning units were identified – segments of text expressing a distinct meaning or idea related to the central research question. Shifts in a topic, emotional tone, or descriptions of actions or experiences within a statement were carefully considered. Color-coded highlighting was applied in the transcripts to identify units related to specific themes. A meaning unit needed to be clearly identifiable as expressing a distinct part of the overall experience. A detailed log was maintained detailing why particular segments were selected as meaning units. 4) Formulation of Descriptive Statements: For each identified meaning unit, a concise descriptive statement was formulated. These statements were written in the third person, focusing on the essence of the participants’ experience. The researcher’s own interpretations or adding anything not directly expressed in the text were carefully avoided. This was a very iterative step; these statements were reviewed multiple times to ensure accuracy and avoid bias. 5) Synthesis of Essential Structures: The descriptive statements were systematically compared and analyzed to identify patterns, commonalities, and emerging themes across participants’ accounts. This process involved sorting statements into preliminary categories, refining these categories through repeated review, and looking for relationships between categories.

This resulted in the identification of the essential themes comprising the lived experience of these parents. A thematic map was prepared to visually organize the relationships between the emergent themes. To ensure validity, the original data and the descriptive statements were repeatedly reviewed to check for congruency.

Additionally, Lincoln and Guba (1985)’s criteria of credibility, transferability, dependability, and confirmability were used. Credibility was achieved by conducting member checking and asking informants to confirm the researcher’s interpretations. Also, the participants were given a copy to review the write-ups for data accuracy. Peer debriefing or peer scrutiny was done by consulting another researcher to go over the notes made in the field, including the researcher’s interpretations of the data. This provided an insider’s evaluation and feedback before the study was published.

3.0. RESULTS

Table 2 presents the primary themes and subthemes that encapsulate the shared experiences of parents caring for children with neurodevelopmental conditions (NDCs) and highlights how these parents interpret and make sense of their experiences. Emerging themes are grouped into Navigating the Demands of Developmental Caregiving and Finding Meaning in the Face of Uncertainty.

Table 2. Summary of Themes and Subthemes

Navigating the Demands of Developmental Caregiving:

The Impact of Caregiving on Parental Well-being

The findings show the multifaceted challenges across emotional, financial, social, and physical domains.

Emotional Toll. The caregiving demands on a parent significantly affected their emotional well-being.  They reported experiencing heightened stress, frustration, and fatigue.  There is a need for continuous monitoring and supervision due to limitations in their children’s communication, self-care, and mobility. Hence, resulting in a significant increase in effort, often described as “triple” the exertion for caregiving, unlike caring for typically developing children. This intensive caregiving contributed to burnout and, in some cases, depression, as illustrated by Mother A’s statement: “It’s triple the time giving assistance. It has been difficult. I had to exert so much effort. I had to give full-time assistance.” Mother D further elaborated on the emotional burden: “There is a need to really be with him, full assistance. I experienced burnout and fatigue. There was a moment when I also underwent depression.”  These findings align with previous research indicating unrelenting stress and anxiety among parents of children with undiagnosed conditions (Aldiss et al., 2021).

Financial Strain. The unique needs of their children significantly impacted family finances. Participants’ income was depleted, and financial challenges increased when they faced disruptions in their employment. As Mother C explains, “Because of his condition…I needed to take care of him always…My work was also sacrificed. It’s very challenging to leave him with others because they do not know how to take care of his needs.” This financial burden further intensifies the stress and difficulties associated with caregiving.

Limited Socialization. Caregiving responsibilities substantially restricted social interactions for the participants. The intensive demands of care prevented them from spending time with friends and family, leading to feelings of social isolation. Mother D’s statement, “I have limited socialization…At times, instead of going out and spending occasions with friends or others, I needed to take care of my son,” exemplifies this pervasive constraint.

Physical Health Consequences. Both the physical demands of intense caregiving and physical deterioration seen among middle-aged individuals led to significant physical health consequences for the parents. They reported increased fatigue and decreased energy, compared to their earlier years, but they attributed it more to their caregiving tasks than to age-related causes. Mother D noted, “During my early years…I had a lot of energy. But now I just feel tired every day because I have to take care of my child’s needs.”  This finding is consistent with the previous research that discusses the link between intense parenting of children with complex needs and the subsequent parental health challenges (Woodgate et al., 2015).

The cumulative effect of emotional strain, financial hardship, social isolation, and physical health consequences is particularly dreadful in this age group (Aldiss et al., 2021). Middle adulthood is often a period characterized by competing demands: established careers, potential caregiving for aging parents, and the ongoing responsibilities of raising children. The added burden of caring for a child with complex needs significantly disrupts this delicate balance.  The physical demands of exhaustive caregiving are even made complicated by the normal age-related experiences of middle-aged individuals, exacerbating fatigue and reducing energy levels (Woodgate et al., 2015). The financial strain is particularly impactful given existing financial commitments and the often unpredictable income reductions experienced by caregivers.

Challenges of Access to and Engagement with Healthcare Services

The findings highlight the complex interaction between financial constraints, emotional responses to uncertainty, and the limited availability of specialized care, which aligns with extant literature on the burdens faced by parents of children with special needs in resource-limited settings (Zhang & Zhan, 2018).

Limited Access to Specialized Care. The participants reported that they rely solely on general practitioners (GPs) for their children’s care, primarily due to financial limitations.  This resulted in delayed or no access to specialized diagnostic assessments and care in their barangay, which influences the health trajectories of children with NDCs, aligning with research demonstrating the disproportionate result of socioeconomic status on access to healthcare for children with special needs (Miller & Tzeng, 2020).  The following quote illustrates this reality:

“My son was one year old when he had a checkup due to a cold, and the medical doctor said that he was a special child. The doctor referred us to a specialist whose clinic was outside our Barangay area, but we lacked the financial resources to pursue this. No other specialist had assessed him since birth. I just relied on what my doctor had told us [the first time] about our child—that he was special and tried my best to take care of him (Mother A).”

This highlights a critical gap in healthcare accessibility, particularly impacting middle-aged parents who are already taking care of multiple responsibilities.  The absence of specialized care adds to parental uncertainty and anxiety, affecting their ability to effectively support their child’s development.

Financial Barriers and the Emotional Landscape of Uncertainty. The financial burden of seeking a formal diagnosis and treatment was a pervasive theme among the participants. Even though numerous parents reported that they accept their child’s condition, a significant number expressed persistent uncertainty and a desire for a definitive diagnosis to better understand their child’s needs. This tension between acceptance and uncertainty is a common experience among parents of children with special needs (Keenan & Hurst, 2022). The following quote captures this elaborate landscape of emotions:

“Ever since our doctor mentioned that our child needs special care and parenting, I just fully accepted this fact. I understood that he had special needs. Although at some point in my parenting of him, I still wanted to know the formal diagnosis of my child, but I had to let it go since we were short of resources (Husband C).”

This highlights the difficult decision parents face: accepting the present reality while simultaneously grappling with the uncertainty of an undiagnosed condition and the financial constraints preventing them from seeking a definitive diagnosis.

Division of Caregiving Responsibilities and Parental Roles

Navigating the complexities of caregiving for children with undiagnosed neurodevelopmental conditions (NDCs) reveals both individualistic and collaborative dimensions within parenting roles. The participants in this study highlight a notable divergence in the way mothers and fathers participate in the caregiving process, reflecting a dynamic yet unequal distribution of responsibilities.

Unequal Distribution of Caregiving Burden. Among the participants, the responsibilities of caregiving often fall unevenly between mothers and fathers. Mothers on the frontline tend to have more time to provide direct care for their children, particularly since many occupy the role of housewives, while fathers are frequently away earning a living. This dynamic is acknowledged by both parents; mothers express a deeper familiarity and experience in meeting their child’s needs. For instance, one mother articulated the challenges of her role: “When it comes to the difference between the mother and father in taking care of our son, it’s far more challenging for me as a mother. I believe that I am more caring for my son. I need to take care of him triple times compared to his father (Mother C).” Meanwhile, fathers also recognize this imbalance, as one husband noted, “His mother always took care of him [son] because I was always at the farm working. When I came home, I could see that he would be roaming around; oftentimes, that stressed me. I just try to understand him (Husband A).”

Shared Caregiving and Collaborative Parenting. Despite these differences in caregiving roles, both parents try their best to demonstrate team parenting. At the end of the day, these participants view their relationship as a partnership in which they work together to meet their child’s developmental needs. As one mother expressed, “I am the one giving more assistance to her than her father. Her father was always at the farm. Although this is the setup, we work together for the welfare of the child. We work as a team for the development of our child (Mother E).” This sentiment resonates across the experiences shared by other parents, highlighting that, overall, mothers and fathers strive to collaborate effectively, taking turns in fulfilling their caregiving responsibilities given their circumstances (Woodgate et al., 2012).

Socioeconomic and Geographic Barriers to Care

Living in a barangay presents unique challenges for parents of children with undiagnosed neurodevelopmental conditions (NDCs). These challenges are worsened by the community’s limited understanding of such conditions, families’ financial constraints, and minimal governmental support.

Limitations in Diagnostic Access and Information. The barangay’s limited knowledge about these children’s conditions often results in negative experiences for the parents and the children. These are evident in the incidents of intimidation, bullying, and ridicule that they experienced. The parents have a shared awareness of their community’s perceptions and behavior toward their children and recognize that the unacceptance promotes stigma. One mother expressed her pain regarding the bullying her child faced: “There is a lack of understanding from other people regarding his condition. Some kids bully him, and some parents don’t understand. That is why I do not always expose him to these people. He fights back when he is bullied. There is still a stigma about his condition. I feel hurt when other people say something negative about him (Mother A).”

Financial Constraints on Healthcare and Support Services. Financial limitations or lack of financial resources further hinder parents in providing adequate care for their children. For example, they have difficulty gaining access to consultations, formal evaluations with specialists, and special education interventions. One mother poignantly highlighted this issue: “We wanted to get him therapy just like his cousin, who has a similar condition, but we could not afford it. If there is a basic need and we don’t have the resources, we resort to asking lenders (Mother A).” Regardless of these frustrations, many parents report a sense of contentment regarding their caregiving and their child’s current functioning.

Inadequate Community and Governmental Support Systems. Participants in the study also noted the limited support and assistance from government entities, which suggests a broader lack of recognition of their children’s needs. Although there was previously some government support, assistance was dependent on the allocated budget for the local unit, which was not much. While participants did not express remarkable frustration over this situation, they conveyed a desire for more robust support for their situation. One mother stated, “There is limited support from others for our child. Although we do not completely rely on this, we wish there were really a formal program for our needs, for example, from the government (Mother C).”

The lack of information and education about NDCs leads to experiences of social taboos and stigma when interacting with families with neurotypical children (Currie & Szabo, 2020). While some received support, most did not want to burden other people with their concerns. Also, without a diagnosis, accessing appropriate support is often challenging, which adds to the stress of these parents (Fäldt & Fängström, 2024; Lewis et al., 2010). In like manner, the lack of programs from healthcare professionals for this population also impacts their families (Oulton et al., 2021).

Finding Meaning in the Face of Uncertainty:

God as Source of Strength

In their journey of raising children with undiagnosed neurodevelopmental conditions (NDCs), parents encounter both adversity and opportunity. Their lived experiences show that acceptance of the difficulties that come with their child’s condition paves the way for deep personal growth. Even though they freely express dread about an uncertain and unpredictable future, they find themselves being comforted and receiving strength from God.

Faith and Spiritual Connection. When asked to share their experiences, respondents often conveyed a deep personal connection to God, frequently attributing their strength to Him, making them develop into the resilient parents that they are. One mother expressed, “I would say that I am 100% resilient because I was able to let him [son] grow and develop to what he is now with the help of God. It’s not easy to take care of him… (Mother C).” In her words, the acknowledgement of a struggle and the embrace of a transformative journey, where faith plays an important role in shaping her identity as a parent, are present.

Intentional Adaptation

Throughout this study, parents illustrated how focusing on the positive aspects of their parenting journey has become a crucial coping mechanism (Aldiss et al., 2021). In their narratives, it was shown that even with the difficulties they experience, they find joy and fulfillment in their roles as caregivers, ultimately helping them construct meaningful understandings of their experiences.

Shift to a Realistic View. Participants shared that their children’s conditions persuaded them to intentionally shift to a more optimistic and realistic view of life. One participant articulated this shift, stating, “The experiences we had as parents are those that made us more resilient. We shifted our minds from always thinking negatively about the situation to being positive about our life and modeling these vibes on my son so that he will also be positive. Although sometimes, I feel so tired already. I always remind myself, however, that I was lucky to have him. Because of him, I had this positive mindset. I became stronger. I became more resilient. He taught me how to be a responsible mother (Mother D).” This shows the essential part of parental resilience— it is not simply a reaction but a purposeful response to adapt and adopt a positive mindset against challenges.

Championing Normalcy. Throughout their journey, many parents made the conscious decision to treat their child as a typical child. They advocate an environment where their child can thrive without the overshadowing weight of diagnosis, showing their desire for normalcy and empowerment for themselves as well. For example, another mother articulated, “I let him be a normal kid like others. I don’t allow my pity to dominate his experience; it will only make things harder for him. I want him to feel that he has no condition, that he is just normal (Mother D)”. This sentiment reveals the commitment to ensuring that their child’s identity is not bound by the limitations of any diagnosis.

Embracing Joy in the Journey. Even for parents whose child has an undiagnosed NDC, their birth is a life-changing event that brings happiness and a sense of purpose. Their relationship inspires them to thrive. They do not view their child’s uniqueness as a limitation but as an invitation to foster a deeper connection. One mother shared, “When I had him, I would say I had a happier life. Before he was born, I thought I would continue being lonely. But from the moment he was born, I realized I was so much happier. He made me happier (Mother D).” In this reflection, we see that her child’s existence positively changed her sense of self. This emphasizes the joy found in her parenting journey.

Fostering Connection and Companionship. The joy that spreads within these families is often accompanied by a profound sense of companionship that fills their daily lives. Despite struggling with challenges, parents share an uplifting collective experience that contributes to their overall well-being.  “Even in our hardest moments, there is laughter and warmth in our home (Mother D)”, one participant expressed, suggesting that the emotional landscape of the family is enriched by the child’s presence. This companionship acts as a balm against loneliness, proving that their struggles are met with shared joy, transforming what could be isolation into a tapestry of connection that includes every family member.

Insights

Navigating Uncertainty. Raising children with undiagnosed neurodevelopmental conditions (NDCs) comes with challenges. These challenges create significant frustrations for parents, which stem from their children’s diverse and unmet needs. However, amid these difficulties, parents illustrate significant resilience and adaptability. They remain steadfast supporters of their children, showing strength despite adversities. While this journey tests their resolve it also empowers them to learn and grow alongside their children throughout this experience.

Comfort in Informality. Many parents in this study leaned heavily on the initial impressions provided by their doctor. Due to resource constraints, the lack of follow-up assessments from specialists has led to informal understandings of their child’s condition. Even though they do not express significant worry regarding a formal diagnosis—having internalized a sense of understanding from family physicians—they still experience uncertainty. This challenges parents as they navigate the intricacy of their child’s unique needs without a clear understanding of it.

Navigating Limitations in the Rural Area. Living in a rural context presents unique challenges that aggravate the difficulties faced by these families. The limited community knowledge regarding neurodevelopmental conditions, financial constraints, and insufficient support systems plays a part in the cycle of frustration and disappointment. These factors hinder parents’ ability to meet their children’s needs effectively and make access to essential resources a continuous struggle, exacerbating their feelings of isolation and helplessness.

Transforming Challenges into Growth. Despite facing challenges, these parents exhibit an inspiring positivity and a commitment to personal growth. They perceive their experiences not merely as obstacles but as opportunities for resilience and transformation. While they are heavily concerned about their children’s futures, they remain focused on fostering independence and pursuing personal aspirations. Intentionally viewing it from a positive perspective helps parents find contentment in their circumstances. They see their journey as a vital part of their family’s narrative. Through perseverance and faith in God, they foster strength that is rooted in shared values and experiences, prioritizing their family’s well-being and embracing the potential to thrive and flourish.

4.0. CONCLUSION

This qualitative descriptive phenomenological study examines the lived experiences of middle-aged Filipino parents in rural Northern Philippines caring for children with undiagnosed neurodevelopmental conditions (NDCs). Specifically, the way parental roles, caregiving responsibilities, and the development of coping mechanisms are influenced while navigating a landscape with diagnostic, socioeconomic, and geographic limitations. Findings show a nuanced interaction between the challenges and resilience these parents face in their everyday lives.  Mothers carry most of the caregiving burdens, creating an unequal distribution of responsibilities and burdens among parents. There are also significant financial and informational barriers that hinder access to healthcare and support services. However, despite these challenges, parents show significant resilience through strategies by redefining family roles and finding solace in God. Furthermore, the study shows the need for culturally sensitive interventions that address these systemic issues, alongside improved access to diagnostic services and community resources. Future studies should explore the long-term impacts of undiagnosed NDCs on families and assess the effectiveness of culturally tailored support programs that aim to empower parents while improving their well-being.

5.0. LIMITATIONS OF THE FINDINGS

The phenomenological design and sampling technique used in this study effectively capture the lived experiences of middle-aged Filipino parents caring for children with undiagnosed neurodevelopmental conditions (NDCs). However, the participants who are primarily motivated parents with high awareness and acceptance of their children’s conditions may not represent a diversity of perspectives. Feelings of hesitation or denial about their child’s condition caused some to decline the invitation to participate in the study, which may have limited the experiences captured. Additionally, all the participants came from one geographic location, which may influence their insights due to the cultural and regional factors of that area. Finally, while the sample size is sufficient for qualitative analysis, future research with a larger and more diverse participant group could show additional themes.

6.0. PRACTICAL VALUE OF THE PAPER

This paper offers significant practical value by providing insights to different groups (e.g., healthcare professionals, policymakers, and community organizations) who support families with NDCs.  There is a critical need for culturally fit interventions, showing the importance of recognizing the unique challenges faced by middle-aged Filipino parents. By providing a clear understanding of their experiences, these stakeholders can produce tailor-fit support services and resources that address the informational, financial, and emotional barriers their families face. Finally, the study shows the call for increased access to diagnostic services and community resources to enhance these families’ well-being. Overall, these findings serve as a foundation for future initiatives that will empower parents and improve care for children with NDCs.

7.0. DIRECTIONS FOR FUTURE RESEARCH

The results suggest other important areas for future research. First, exploring the change in parental roles, depending on a specific neurodevelopmental condition, can help professionals create more tailor-fit interventions that target unique challenges. Second, investigating parental experiences at various life stages will show the evolution of roles and challenges over time. A comparative study between parents of children with diagnosed and undiagnosed conditions in rural contexts may reveal other important support needs. Expanding the scope of the research to include other rural towns and communities will help gain insight into the regional differences and inform appropriate support strategies. Furthermore, examining the differences in the experiences among parents in urban and in rural settings can show how the environment is a factor that influences caregiving experiences. Finally, future research should have a larger sample size to improve the generalizability of findings within the broader undiagnosed community. With these, future researchers can deepen the understanding of families with children affected by undiagnosed neurodevelopmental conditions (NDCs).

8.0. DECLARATION OF CONFLICT OF INTEREST

The authors declared no potential conflict of interest with respect to the research, authorship, and/or publication of this article.

9.0. ETHICAL APPROVAL

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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