Strengthening Parental Capabilities: Examining the Role of Interdisciplinary Support in Enhancing Parental Well-Being and Capabilities in Developmental Disability Care

Abstract

Purpose: The purpose of this study was to explore parents’ lived experiences raising children with developmental disabilities (DDs), examine their emotional and physical challenges, and investigate the role of interdisciplinary support in strengthening parental capabilities. Materials and Methods: A qualitative descriptive study was conducted using two focus groups (n = 23 parents). Data were analyzed using Braun and Clarke’s six-step thematic analysis. Results: Five major themes emerged: (1) acceptance and emotional journey, (2) healthcare system navigation challenges, (3) educational and community integration barriers, (4) the development of coping strategies and support systems, and (5) resilience and positive growth. Parents reported significant emotional challenges but demonstrated remarkable resilience when supported by comprehensive care systems. Conclusions: The findings highlight the need for integrated support systems that address both the practical and emotional needs of parents raising children with DDs. Healthcare providers and community stakeholders must work collaboratively to create more inclusive and supportive environments for these families.

1. Introduction

Developmental disabilities (DDs) affect approximately one in six children globally, presenting significant challenges for parents and caregivers (Centers for Disease Control and Prevention 2024). These disabilities create unique caregiving demands that impact parents’ emotional well-being, physical health, and social relationships Ranta et al. (2024). The research problem this study addresses is the persistent fragmentation of support services for families of children with DDs, which forces parents to navigate complex, disconnected systems while managing intensive caregiving responsibilities, a burden that disproportionately affects families from disadvantaged backgrounds.

Early work by (Sen 1985, 1999) established the original capability approach, focusing on the actual freedoms people have to achieve well-being rather than merely their resources or subjective satisfaction. Building on this foundation, Nussbaum (2000) developed a more specific version of the capability approach that identified central human capabilities essential for dignity and flourishing. Researchers like Mitra (2006) began applying the capability framework to disability studies, demonstrating how societal barriers restrict the capabilities of individuals with disabilities and their families.

Recent research confirms that parents of children with DDs experience significantly elevated stress compared to those raising typically developing children (Cheng and Lai (2023). This stress stems from both direct caregiving responsibilities and navigating fragmented service systems (Broder-Fingert et al. 2019; Myers et al. 2024) documented how parents spend an average of 13 h weekly coordinating care across multiple disconnected systems, while Doyle et al. (2020) found that parents typically interact with 5–12 different service providers monthly, often receiving conflicting recommendations.

The challenge of service fragmentation has been recognized for decades, with researchers like (Sloper 1999; Kohler 1996) identifying how the lack of coordination between health, education, and social services creates substantial burdens for families. Despite this long-standing recognition, Xie et al. (2024) found that service integration remains inadequate, particularly in marginalized communities where access to specialized services is often limited by geographic, financial, and cultural barriers. This fragmentation significantly impairs parents’ capabilities to effectively care for their children while maintaining their well-being.

A study by Sapiets et al. (2023) identified limited research examining interdisciplinary support approaches for families of children with developmental disabilities, with most studies focusing on high-resource settings and homogeneous populations. This gap in the literature is particularly concerning given the disproportionate impact of fragmented services on families from diverse socioeconomic backgrounds.

This study employs Nussbaum’s Capability Approach (Nussbaum 2011, 2020) as its theoretical framework. This model, evolving from Sen’s earlier work, emphasizes that human well-being depends on what people can do and be, also known as their “capabilities”. This framework is particularly relevant for analyzing parental experiences, as it focuses on the actual freedoms parents have to fulfill caregiving roles while maintaining their well-being. Recent applications by Devaney et al. (2023) demonstrated how systemic barriers constrain parental capabilities, while appropriate support can expand them.

This research aims to identify how integrated, interdisciplinary support systems can enhance parents’ capabilities in caring for children with developmental disabilities across diverse socioeconomic contexts. Th study examines parents’ lived experiences of the emotional and physical impacts of caregiving, the specific barriers they encounter when navigating fragmented support systems, their coping strategies and support networks, and how access to interdisciplinary services affects their capabilities to meet their children’s needs while maintaining their well-being.

By centering parents’ perspectives across diverse contexts, this research seeks to address the critical gap between the theoretical promise of integrated care and the practical realities of implementation. The findings will inform the development of more responsive support systems that strengthen parental capabilities and improve outcomes for families of children with developmental disabilities.

Research Objectives

The research objectives were as follows:

• Explore parental perceptions of emotional and physical impacts;
• Examine the need for capability-strengthening interventions.

2. Materials and Methods

2.1. Study Design

This study employed a qualitative descriptive approach, which is particularly suitable for understanding complex social phenomena and capturing participants’ experiences in their own terms (Doyle et al. 2020). This methodology was selected over more interpretive approaches because it allows us to stay close to parents’ descriptions of their experiences while still applying Nussbaum’s Capability Approach as an analytical lens. Qualitative description is especially appropriate when the aim is to inform practical interventions and policy development, making it well aligned with our goal of identifying how interdisciplinary support systems can enhance parental capabilities.

2.2. Participants

This study included 23 parents divided into two focus groups (n = 10 and n = 13). Participants were selected using purposive and snowball sampling techniques (Palinkas et al. 2015) The parent participants were all female, aged 25–45 years, with 2–15 years of experience caring for children with DDs. The initial recruitment targeted parents through the Khayelitsha District Hospital’s developmental pediatrics clinic, where we worked with clinic staff to identify potential participants who represented diverse points on our sampling matrix.

For snowball sampling, we asked initial participants to refer other parents who might provide different perspectives than their own, particularly those who accessed different support systems or whose children had different developmental disabilities. We provided specific guidance to referring participants, asking them to consider parents who might have contrasting experiences with healthcare navigation, educational placement, or community support to broaden our understanding of varied parental experiences.

Participants were eligible for inclusion if they were primary caregivers of at least one child with a formally diagnosed developmental disability. We specifically sought to include parents of children with diverse developmental disability diagnoses to capture a range of caregiving experiences and support needs. The final sample included parents of children with autism spectrum disorder (n = 4), Down syndrome (n = 8), cerebral palsy (n = 5), intellectual disability without a specific etiology (n = 2), and attention deficit hyperactivity disorder (n = 4). The children’s ages ranged from 3 to 17 years (mean age = 8.4 years), and all had received their diagnoses at least two years before the study.

Our selection criteria were as follows: (1) being a primary caregiver (parent or legal guardian) of at least one child with a formally diagnosed developmental disability; (2) having provided care for the child for at least two years post-diagnosis to ensure sufficient experience with support systems; (3) ability to communicate in either English, Afrikaans, or isiXhosa; and (4) willingness to discuss their experiences in a group setting. We excluded parents whose children had only physical disabilities without developmental impacts, as well as those whose children had been diagnosed less than two years before recruitment. We aimed to include parents across a broad socioeconomic spectrum and from both urban and peri-urban areas to capture diverse experiences with access to services.

In

Table 1. Participant demographics.

Characteristic	Parents (n = 23)
Gender (F/M)	23/0
Age range	25–45
Experience with DDs	2–15 years
Children’s Diagnosis:
Autism spectrum disorder	(n = 4)
Down syndrome	(n = 8)
Cerebral palsy	(n = 5)
Intellectual disability	(n = 2)
Attention deficit hyperactivity disorder	(n = 4)

below the focus groups were relatively large (10 and 13 participants) compared to typical focus group recommendations of 6–8 participants. This group size was deliberately chosen to accommodate the diverse range of developmental disabilities and socioeconomic backgrounds represented, ensuring that multiple perspectives were included. To address the challenges of managing larger focus groups, we implemented several strategies to maintain data quality: (1) two experienced facilitators were present for each group; (2) structured turn-taking techniques were employed to ensure all participants had opportunities to contribute; (3) smaller break-out discussions were used for certain topics before reconvening; and (4) careful attention was paid to group dynamics to prevent dominant voices from overshadowing quieter participants. We observed that while the larger groups sometimes required more facilitation, they also created productive peer interactions where participants built upon each other’s experiences, particularly when discussing similar challenges with different disability types.

2.3. Data Collection

Data collection proceeded through multiple channels to ensure comprehensive coverage of the research questions. Focus group discussions lasting between 60 and 100 min were conducted in a semi-structured format, allowing for natural conversation flow while maintaining focus on key research objectives. Throughout the interviews, field notes and observations were systematically recorded to capture non-verbal cues and group dynamics.

The focus group discussions were guided by a semi-structured interview guide developed based on a literature review and consultation with two expert advisors in the field of developmental disabilities. The guide explored five key areas: (1) daily experiences and challenges of raising a child with developmental disabilities, (2) interactions with healthcare systems and providers, (3) educational experiences and community integration, (4) support systems and coping strategies, and (5) perceptions of quality of life and meaning-making. Key questions included the following: “Can you describe a typical day caring for your child?”; “What has been your experience accessing healthcare services?”; “How would you describe your interactions with healthcare providers?”; “What challenges have you faced in educational settings?”; “What support systems have been most helpful to you?”; and “How has raising a child with developmental disabilities affected your life perspective?”.

Focus groups were conducted in community centers located within participants’ neighborhoods to maximize accessibility and comfort. Two experienced facilitators led each session, one primary moderator and one assistant who managed the recording equipment and took observational notes. Both facilitators had backgrounds in qualitative research methods and experience working with families affected by developmental disabilities. Sessions were conducted in the participants’ preferred language, with translation provided as needed.

Despite the larger than typical focus group sizes, the quality of the discussion was maintained through careful moderation techniques. The extended duration of sessions (60–100 min) ensured that all participants had sufficient opportunities to contribute. We observed that the larger groups actually enhanced data richness in several ways: parents of children with different disabilities were able to compare experiences across diagnostic categories; participants from different socioeconomic contexts illuminated structural inequalities through their contrasting narratives; and natural peer support dynamics emerged, providing observational data about the value of parent-to-parent connections. When conversation occasionally veered off-topic due to the larger group size, facilitators gently redirected the conversation using probing questions linked to the research aims.

All sessions were audio-recorded and transcribed verbatim, with careful attention to maintaining participant confidentiality. The data collection process followed a systematic progression from initial participant recruitment through final documentation, ensuring consistency and rigor throughout the study.

2.4. Data Analysis Approach

The study employed Braun and Clarke’s six-step thematic analysis framework to systematically analyze the collected data (Braun and Clarke 2022). We selected this analytical approach because of its compatibility with our qualitative descriptive methodology and its flexibility in accommodating our theoretical framework. Thematic analysis allowed us to identify patterns in parents’ experiences while interpreting these patterns through Nussbaum’s Capability Approach. Specifically, during our analysis, we paid particular attention to how parents described their freedoms and opportunities (capabilities) to function effectively as caregivers, as well as how these capabilities were either constrained or enhanced by various support systems.

The analysis process followed Braun and Clarke’s six steps: First, data familiarization involved team members reading transcripts multiple times and discussing initial impressions. Second, we generated initial codes by identifying meaningful segments of texts related to parental experiences, challenges, and supports, with particular attention to capabilities. Third, we collated these codes into potential themes, constantly comparing emerging patterns with Nussbaum’s capability framework.

Fourth, we reviewed themes by returning to the original data to ensure they accurately represented participants’ experiences while meaningfully connecting to capability concepts. Fifth, we refined and named themes to capture both their descriptive content and theoretical significance. Finally, we produced the analysis report, selecting compelling examples that illustrated both the lived experiences of parents and the theoretical insights derived from the capability lens.

This systematic approach ensured analytical rigor while maintaining theoretical consistency throughout our interpretation of parents’ experiences. Regular team meetings and reflexive discussions about how our interpretations connected to Nussbaum’s theoretical framework further enhanced the trustworthiness of our findings.

2.5. Ethical Considerations

This study received ethical approval from the Biomedical Research Ethics Committee at the University of the Western Cape (Ethics Reference Number: BM23/1/10). Informed consent was obtained from all participants, with a thorough explanation of the study, voluntary participation, and the right to withdraw. To ensure confidentiality and anonymity, identifying information was removed during transcription, participants were assigned alphanumeric codes (e.g., P1 FG1), and names mentioned in quotes were replaced with pseudonyms while preserving meaning. Given the discussions’ sensitive nature, facilitators were trained to recognize emotional distress, and participants could skip uncomfortable questions. All data were secured on password-protected devices with access restricted to the research team, who signed confidentiality agreements. Throughout the process, we maintained respect for participants as authorities on their lived experiences rather than merely sources of data.

3. Results

The thematic analysis revealed five major themes that characterized parents’ experiences raising children with developmental disabilities, as presented in

Table 2. Themes and categories.

Theme	Categories
Acceptance and Emotional Journey	- Initial shock and difficulty accepting the child’s disability
	- Gradual acceptance and finding strength through support groups and other parents
	- Dealing with emotional challenges and the impact on the family
Navigating the Healthcare System	- Experiences with doctors and healthcare providers
	- Challenges in obtaining a proper diagnosis and treatment
	- Dealing with insensitive or dismissive attitudes from healthcare professionals
Educational and Community Challenges	- Difficulties finding suitable schools and daycare facilities
	- A Lack of understanding and acceptance from the community
	- Dealing with discrimination and stigma
Coping Strategies and Support Systems	- The importance of support groups and organizations for parents
	- Relying on family and friends
	- Advocating for their children and educating others
Resilience and Positivity	- Embracing their children’s unique qualities and capabilities
	- Finding joy and meaning in the journey
	- Desire to help and support other parents in similar situations

.

Throughout these themes, parents’ narratives highlighted the significant impact of interdisciplinary support, or lack thereof, on their journey.

3.1. Theme 1: Acceptance and Emotional Journey

Parents described a complex emotional trajectory that began with an initial shock and denial upon diagnosis, gradually evolving through distinct psychological phases. As one mother expressed, “I don’t want to lie; I am not happy because I didn’t give birth to him like that, so it disturbs me and I am unable to take him with me when I am visiting people…” (P2 FG2). This reflection captures the adjustment many participants experienced during the early stages following their child’s diagnosis. The sense of grief over unfulfilled expectations emerged repeatedly in our discussions, with another parent sharing her daily struggle: “My life is not meaningful because I am unable to control him” (P1 FG2). These expressions of distress illustrate how the emotional journey often progresses through the stages of grief and anger before potentially reaching acceptance.

The process of acceptance appeared particularly challenging when parents faced social isolation or stigma. One mother revealed, “Sometimes inside I am feeling like, oh, my! Even me I totally can’t stand Ludwe” (P1 FG2), highlighting the complex and sometimes contradictory emotions that characterize this journey. Despite these challenges, many participants demonstrated remarkable resilience and eventual acceptance of their circumstances. As one parent reflected, “I think I got the strength… I got strength when the doctor told me that my child is not normal. I looked at this child and I could not see what the Doctors were talking about” (P2 FG1).

Several parents emphasized the importance of self-acceptance as a prerequisite for effectively supporting their children. One participant noted, “What I notice the most is that you, as a parent, must be strong so that even your child can be strong. The more you are weak, your child can sense what you are feeling” (P3 FG2), demonstrating an awareness of how parental emotional states influence their children’s well-being. Another parent shared a profound perspective on meaning-making: “For me I am living a meaningful life, the reason being since I am saying I am living a complete life is, firstly in my life I live by accepting myself that this is who I am, and every challenge I come across and acknowledge that this challenging I am facing is mine” (P3 FG2). This statement reflects the transformative potential of acceptance, where challenges become integrated into a reconstructed sense of meaning and purpose.

Our analysis revealed that parents who reported receiving appropriate support during the period immediately following diagnosis demonstrated better adaptation and acceptance of their child’s condition. Those who connected with support networks early in their journey expressed less ongoing distress compared to those who faced the diagnosis without adequate support systems.

3.2. Theme 2: Healthcare System Navigation

Participants consistently highlighted challenges in navigating fragmented and often unresponsive healthcare systems. Communication barriers with healthcare providers emerged as a significant issue, with several parents describing dismissive or insensitive treatment. One mother recounted a traumatic birthing experience: “I was not attended to, I gave birth to a child on a bed that was broken, facing downwards, and not the bed that I was supposed to be. I indicated that I was in labour pains and the child was on the way, and no one was paying attention to me, they were laughing and sitting there on the chairs” (P4 FG1). This account shows how healthcare interactions can exacerbate parents’ vulnerability at critical moments and establish a pattern of institutional distrust that complicates their journey through the healthcare system.

The challenge of obtaining clear diagnostic information and guidance emerged repeatedly. One parent expressed frustration with the lack of specific information about her child’s condition: “I want to know what it is exactly, which autism he has, because there are many, so which one this child has, the doctor doesn’t say much, he would just tell you I-- I am not a Sangoma [traditional healer], I won’t consult” (P1 FG2). This dismissive response from a healthcare provider illustrates how parents’ legitimate questions about their children’s conditions are sometimes met with resistance rather than support, leaving them to navigate complex diagnostic landscapes alone.

Delays in diagnosis and referral to appropriate services represented another significant barrier. One mother shared, “I only heard from my neighbor when he was 7 months, and she asked why, whereas he is 7 months, why is he not sitting like other children his age do then she advised that I take him to a Day clinic, and even there they didn’t find the problem” (P7 FG1). This experience highlights how critical developmental concerns are sometimes overlooked within primary healthcare systems, forcing parents to rely on informal community networks for guidance.

Parents from local townships described particularly significant geographical and financial barriers to accessing specialized healthcare services. Several participants mentioned traveling long distances to reach appropriate medical care: “I have to wake up at 4 AM to catch the first taxi so we can make it to the hospital by 9. It’s too far to walk, and sometimes we miss appointments because the transport is not reliable” (P8 FG1). Another parent noted the financial burden: “There are no specialists in our area. We must go to Khayelitsha District Hospital for every appointment, which costs money we don’t have” (P6 FG2). These structural barriers disproportionately affect families from disadvantaged backgrounds, creating cascading effects on their ability to access consistent care for their children.

3.3. Theme 3: Educational and Community Integration

The analysis revealed significant challenges in securing appropriate educational placements and facilitating community integration. Social stigma emerged as a particularly painful obstacle, with one parent bluntly stating that “The community is abusive. They are abusing children who are living with disability” (P10 FG1). This experience of community rejection was common among participants and complicated their efforts to secure appropriate educational placements for their children. Parents described a lack of understanding that manifested both in institutional settings and in daily community interactions, creating environments where their children were frequently marginalized or excluded.

The educational system presented particular challenges, with many parents reporting significant difficulties finding supportive environments for their children. One mother described her extensive search for an appropriate placement: “I have been to five different schools trying to find a place that would accept my child and provide the support he needs. Most places just say ‘We don’t have the facilities’ or ‘We’re not trained for this’” (P9 FG1). This experience reveals how structural barriers within educational systems place the burden of advocacy entirely on parents, who must persistently navigate bureaucratic obstacles with limited institutional support. Another parent highlighted the knowledge gap among educators: “Even when they accept our children, the teachers don’t know how to handle them. My son comes home frustrated because no one understands him” (P3 FG2). This observation points to how inclusion without appropriate training and resources can create nominally integrated but functionally exclusionary environments.

Despite these challenges, some parents described successfully creating supportive networks within their communities. One participant shared her proactive approach: “Yes, I can make relations in the community, even outside, I am someone who markets herself, I market myself as I go, so my children are also like me” (P4 FG2). This statement reflects the agency some parents develop, actively working to reshape community perceptions rather than passively accepting exclusion. Another parent highlighted the transformative potential of finding understanding allies within educational settings: “Finding that one teacher who truly understands has made all the difference, not just for my child’s education, but for our whole family’s sense of belonging is truly a blessing” (P10 FG1). This experience demonstrates how even individual supportive relationships within institutions can significantly impact families’ overall well-being and sense of connection.

The capability to navigate educational systems and foster community integration emerged as a critical domain where parents required significant support. When effective interdisciplinary approaches connected educational, healthcare, and community systems, parents reported greater success in creating inclusive environments for their children. However, in the absence of such coordinated support, parents often described exhausting advocacy efforts that yielded limited results: “The school system promised inclusion but delivered isolation. Every ISP meeting feels like negotiating for basic rights my child deserves by law” (P5 FG1).

3.4. Theme 4: Coping Strategies and Support Systems

Parents developed various coping mechanisms over time, ranging from practical daily routines to emotional support networks. Recent research has highlighted the critical importance of accessible support systems for families raising children with disabilities. Gardiner and Iarocci (2018) found that holistic support approaches that address both practical challenges and emotional well-being contribute significantly to parental resilience and family functioning. Similarly, Masulani-Mwale et al. (2018) identified that culturally appropriate peer support groups provide essential validation and knowledge sharing that formal services often cannot offer.

The data revealed that parents valued integrated support systems that connected different types of services, rather than having to navigate separate systems independently.

These findings complement what we observed in our focus groups, where parents described their evolving journey toward developing effective coping mechanisms:

“It is the Down Syndrome Association that gave me the strength because Esther worked with a lot of mothers. She has the experience of having a child with Down Syndrome and working with parents who have children with Down Syndrome.”

P3 FG1

“I manage her very well. I used to go to parties and take her with me, and she would get crazy there at the party and learned from that, and she got used to it.”

P5 FG2

“My family is very supportive, and there is no one to hurt her, even when she is walking alone. She is safe and she is aware of the fact that I am watched over, she is, and no one is hiding her.”

P5 FG2

“When I first joined the parent group, I was just a crying mother who felt so alone. Now I speak at workshops and help other parents find their voice. Meeting others who truly understood changed everything for me and my child.”

P7 FG1

3.5. Theme 5: Resilience and Positivity

Despite numerous challenges, many parents in our study demonstrated remarkable resilience and reported positive personal growth through their journey of raising a child with developmental disabilities.

“Anyway, it is fun, I like this challenge, I am up for the challenge.”

P3 FG1

Parents described becoming stronger advocates for their children, developing deeper family bonds, and gaining new perspectives on life:

“This journey has made me stronger than I ever thought possible. I’ve learned to fight for what my child needs and to appreciate the small victories.”

P6 FG1

“Our family has grown closer because of our special child. We’ve learned what truly matters in life.”

P2 FG2

“I see the world differently now. I notice when people are excluded and speak up about it. My child has taught me to be a better person.”

P7 FG2

The development of resilience appeared closely linked to the availability of comprehensive support systems. Parents with access to integrated support services reported more positive outcomes and better coping strategies compared to those with limited access to resources:

“Having the support team at the hospital coordinate all his care made everything more manageable. When we moved and lost that service, everything became so much harder.”

P5 FG2

“The difference between having support and not having it is like night and day. With the right support, we can thrive, not just survive.”

P1 FG1

4. Discussion

This qualitative study explored parents’ experiences raising children with developmental disabilities (DDs), examining their emotional and physical challenges. The findings revealed five key themes: (1) acceptance and emotional journey, (2) healthcare system navigation challenges, (3) educational and community integration barriers, (4) development of coping strategies and support systems, and (5) resilience and positive growth. This section discusses these findings with the existing literature and theoretical frameworks.

4.1. Emotional Journey and Acceptance Process

The emotional journey experienced by parents of children with DDs emerged as a significant theme in this study. Parents described a complex trajectory beginning with an initial shock and denial upon diagnosis, followed by stages of grief, anger, and eventual acceptance. As one parent stated, “What I notice the most is that you as a parent must be strong so that even your child can be strong. The more you are weak, your child can sense what you are feeling” (P3 FG2). This finding aligns with research by Dai et al. (2023) who emphasized that the process of acceptance is crucial for developing family resilience. Their study found that parents who successfully navigate the initial shock and grief tend to develop stronger coping mechanisms over time.

Essler et al. (2021) conducted a two-wave longitudinal study examining the dynamic relationships between parental strain, child well-being, and child problem behavior during the COVID-19 pandemic. Their findings revealed that parent-child relationship quality served as a crucial mediator in these relationships, with initial levels of child well-being and behavior problems significantly predicting later parental strain. The study demonstrates that while parents initially experience stress following challenging circumstances, the quality of parent-child relationships plays a vital protective role in facilitating psychological adaptation over time, with most families showing improved adjustment as they develop effective coping strategies. This corresponds with our finding that parents who receive appropriate support during this crucial period demonstrate better adaptation and acceptance. However, as noted by Alderson (2018), while many parents report overall positive experiences, they may still experience periodic grief or sadness throughout their child’s life, reflecting the ongoing nature of the emotional journey.

4.2. Healthcare System Navigation and Access to Support

Parents in this study consistently highlighted challenges in navigating healthcare systems, including difficulty accessing specialized services, communication barriers with healthcare providers, and the complexity of coordinating multiple medical appointments. A parent shared, “I want to know what it is exactly, which autism he has because there are many, so which one this child has, the doctor doesn’t say much” (P1 FG2). This aligns with research by Fitzgerald et al. (2013) who found that children with DDs have higher healthcare needs and face more barriers in accessing appropriate care compared to typically developing peers.

The integration of healthcare systems emerges as a critical factor in supporting parents. Baek et al. (2023) explored parents’ experiences with early intervention services and highlighted the importance of coordinated, family-centered care. Their findings emphasized the need for healthcare providers to be better educated about DDs to provide appropriate support and referrals a sentiment expressed by parents in our study who reported encounters with insensitive or dismissive healthcare professionals.

Andrews et al. (2022) examined the impact of telemedicine on healthcare access during the COVID-19 pandemic, noting that while telemedicine improved access for some families, it also highlighted disparities in digital access. This perspective offers potential solutions for overcoming some of the geographical barriers mentioned by participants in our study, particularly those in rural or underserved areas who described difficulties accessing specialized services.

4.3. Educational and Community Integration

The analysis revealed significant challenges in securing appropriate educational placements and facilitating community integration. Parents described struggles with school system bureaucracy, inadequate support services, and social stigma. As one parent expressed, “The community is abusive. They are abusing children who are living with disability” (P10 FG1). This finding corresponds with research by Xie et al. (2024) who found that these challenges are disproportionately experienced in marginalized communities where access to specialized educational services is often limited by geographic, financial, and cultural barriers.

The capability approach (Nussbaum 2000) provides a valuable framework for understanding these challenges, particularly through the lens of parental agency and freedom of choice. As highlighted in research by Mitchell et al. (2017), the ability of parents to make meaningful choices regarding their children’s education and community participation is necessary for achieving the capability of effective parental advocacy, which is essential for family well-being. When parents of children with DDs are excluded from decision-making processes or face systemic barriers due to inadequate accommodations or social stigma, their development of essential capabilities as caregivers and advocates is impaired.

Supportive community and educational environments have been shown to enhance parental well-being and efficacy in families of children with DDs (Satherley et al. 2021). However, our findings indicate that many parents struggle to access such environments, often encountering resistance, a lack of understanding, or inadequate resources. This highlights the need for systemic changes in educational policies and practices to better support parents in their complex caregiving and advocacy roles for their children with diverse abilities.

4.4. Coping Strategies and Support Systems

Parents in this study developed various coping mechanisms over time, including building strong family networks, engaging with professional support services, participating in parent support groups, developing self-care routines, and establishing effective communication with healthcare providers. One parent noted the value of organizational support:

“It is the Down Syndrome Association that gave me the strength because Esther worked with a lot of mothers. She has the experience self of having a child with Down Syndrome.”

P3 FG1

These findings align with research by Martínez-Rico et al. (2022), who examined the role of family support in parents’ engagement with early intervention programs. They found that both received and perceived support within the family system significantly influenced parents’ engagement with crucial intervention programs. Similarly, Gilmore et al. (2022) studied how mothers support autonomy in young children with DDs and highlighted the importance of recognizing and promoting children’s capabilities, which not only benefits the child but also serves as a positive coping strategy for parents.

The value of peer support emerged as particularly significant in our study. This aligns with findings from DeHoff et al. (2016), who explored the use of online support groups by parents of children with DDs. They found that these platforms provide valuable emotional support and information sharing, particularly for parents in geographically isolated areas. Our participants similarly valued connections with other parents who understood their experiences, with several mentioning how these connections helped them move from isolation to advocacy.

4.5. Resilience and Positive Growth

Despite numerous challenges, many parents in our study demonstrated remarkable resilience and reported positive personal growth. They described becoming stronger advocates for their children, developing deeper family bonds, and gaining new perspectives on life. As one parent expressed,

“Anyway, it is fun, I like this challenge, I am up for the challenge.”

P3 FG1

This theme of post-traumatic growth aligns with research by Ranta et al. (2024), who found that many parents of children with DDs report that their experiences ultimately led to personal transformation and enhanced life meaning.

The development of resilience appears closely linked to the availability of comprehensive support systems. Parents with access to integrated support services reported more positive outcomes and better coping strategies compared to those with limited access to resources. The research conducted by Salomone et al. (2019) demonstrated that the WHO Care-giver Skills Training Program effectively helps caregivers develop skills to support their children’s social communication and adaptive behaviors, while also minimizing challenging behaviors. This comprehensive approach led to improved functioning in children and lessened the burden on caregivers through structured training and support.

Furthermore, the capability to transform challenging situations into opportunities for growth reflects the agency aspect of the capability approach (Sen 1982). Parents who were able to access and utilize appropriate supports demonstrated enhanced capability to function effectively in their caregiving roles while maintaining their well-being, illustrating how properly structured support systems can expand human capabilities even within challenging circumstances.

5. Recommendations

This study’s findings suggest several key implications. The emotional journey described in Section 4.1 indicates a need for structured post-diagnosis support, as parents receiving timely support showed better adaptation. Healthcare navigation challenges (Section 4.2) call for coordination services to manage complex medical appointments, with telemedicine addressing geographical barriers identified by Andrews et al. (2022) and rural participants.

Educational barriers discussed in Section 4.3 point to inclusive education policies that reduce bureaucracy and address the community stigma mentioned by P10. These approaches are especially relevant in marginalized communities where Xie et al. (2024) found disproportionate challenges. A capability approach (Nussbaum 2000) would ensure meaningful educational choices for families.

The support systems highlighted in Section 4.4 demonstrate the value of parent-to-parent mentorship, reflecting the importance of organizations like the Down Syndrome Association mentioned by participants. Online support aligns with Dai et al. (2023) and would benefit isolated families, while parent education focusing on self-care and advocacy enhances coping strategies.

The resilience discussed in Section 4.5 suggests that strength-based interventions could build on the adaptability demonstrated by participants like P3 in FG1. Comprehensive support services enhance caregiving capabilities while maintaining well-being, illustrating Sen’s (1982) agency concept. Future research directions include participatory methodologies, longitudinal studies addressing our cross-sectional limitations, and analysis through a capability lens to connect individual experiences to structural factors.

Limitations of the Study

Several limitations warrant acknowledgment. Our sample consisted exclusively of female caregivers, limiting insights into fathers’ experiences. Recruitment primarily through hospital clinics and parent referrals potentially excluded the most marginalized families not connected to formal systems. The cross-sectional design captured only a snapshot rather than the evolving nature of caregiving across developmental stages. While our larger focus groups (10–13 participants) allowed for diverse representation, this format may have limited the depth of individual narratives despite our facilitation strategies. Additionally, this study’s specific South African context limits transferability to settings with different support structures. Finally, our qualitative approach, while valuable for exploring lived experiences, cannot quantify challenge prevalence or statistically measure relationships between support systems and parental capabilities.

6. Conclusions

This study examined the experiences of parents raising children with developmental disabilities through the lens of Nussbaum’s Capability Approach. Our findings show that fragmented healthcare systems limit parents’ capabilities by requiring them to navigate complex care across disconnected services, placing an especially heavy burden on disadvantaged families. The emotional journey following a diagnosis is a critical period during which appropriate support can significantly influence adaptation to the situation. Additionally, educational barriers further restrict parents’ capabilities for social participation and overall well-being. Conversely, peer support networks enhance their capabilities by providing practical knowledge and emotional validation that are often lacking in formal services. Parents who have access to coordinated, interdisciplinary support demonstrate improved capabilities across multiple areas of life, including emotional well-being, system navigation, and advocacy.

These insights suggest that support systems should be designed to enhance parental capabilities rather than simply deliver services. There should be a particular emphasis on integrating healthcare, educational, and social services to alleviate coordination burdens. Furthermore, peer support should be recognized as an essential component of comprehensive care, and interventions must address the structural inequalities that disproportionately affect marginalized communities. Future research should focus on implementing capability-enhancing approaches across diverse contexts.