Exploring the lived experiences of mothers of disabled children with profound and multiple intellectual disabilities in Saudi Arabia: understanding caregiver empowerment

Caring for children with profound and multiple intellectual disabilities (PIMDs) presents a unique and often overwhelming set of challenges for families, particularly mothers who frequently assume the primary caregiving role. A recent study delves into the nuanced perceptions of empowerment experienced by these mothers in Saudi Arabia, revealing that empowerment is not a static state but a dynamic process deeply intertwined with their lived experiences and daily realities. This research offers a critical lens on existing disability frameworks and proposes a deeper understanding of maternal empowerment grounded in the practicalities of intensive caregiving.

Introduction to the Challenges of PIMDs Caregiving

The landscape of disability studies has evolved significantly, shifting from viewing disability as an individual deficit to understanding it as a social construct shaped by societal barriers. This paradigm shift has amplified interest in empowerment, a concept central to improving the lives of individuals with disabilities and their families. While extensive research has explored the empowerment of parents of children with mild to moderate intellectual disabilities, the unique demands of caring for children with PIMDs have remained a less explored frontier.

PIMDs represent one of the most complex and severe forms of chronic disability, characterized by profound intellectual and motor impairments, often accompanied by sensory deficits, chronic health issues, and significant communication challenges. The caregiving experience for these families is intensely demanding, requiring constant, hands-on attention. Mothers, in particular, dedicate substantial hours to direct care, medical management, resource coordination, and crisis vigilance, leading to significant physical, emotional, and financial strain. Studies indicate that parents of children with severe disabilities report lower quality of life compared to those with milder conditions, grappling with sleep deprivation, chronic anxiety, persistent grief, and social isolation.

This intensified caregiving burden necessitates a re-evaluation of empowerment within this specific context. Traditional quantitative measures, often relying on standardized scales, may fail to capture the intricate tapestry of lived experiences that define empowerment for mothers of PIMDs children. Qualitative research, therefore, becomes crucial for uncovering the deeper meanings and contextual nuances of their empowerment journeys.

Methodology: A Qualitative Exploration of Lived Experiences

To address the gap in understanding, this study employed a qualitative, exploratory, and constructivist approach. This methodology was chosen to delve into the subjective meanings mothers ascribe to empowerment, drawing directly from their life narratives. The research involved semi-structured interviews with 18 mothers of children with PIMDs in Saudi Arabia. The researcher, drawing on a background in special education, adopted a reflective stance to ensure that interpretations remained grounded in the participants’ voices.

The data collection process was designed to be open-ended, allowing mothers to articulate their understanding of empowerment and the experiences that shaped it. Key areas explored included personal experiences, child and family characteristics, definitions of empowerment and its opposite, sources of strength, obstacles faced, and awareness of local and international empowerment systems. Interviews were conducted primarily face-to-face to facilitate rapport and the observation of nonverbal cues, with remote options available for those living further afield. A pilot interview helped refine the protocol, ensuring clarity and relevance.

Purposive sampling was utilized to recruit mothers who could offer rich insights. Participants were mothers of PIMDs children over two years of age, with experience accessing local services. The definition of PIMDs was rigorously applied, focusing on profound intellectual disability, severe motor disability, and accompanying sensory and health impairments, while excluding children with multiple, but less severe, disabilities. Recruitment occurred through various channels, including special education centers, hospitals, and social media, with snowball sampling also employed. Data collection continued until subject saturation was achieved, with a final sample of 18 mothers.

Data analysis involved a thematic approach, with transcripts meticulously coded manually. This iterative process moved from initial codes to broader categories and overarching themes, ensuring that findings were inductively derived from the participants’ narratives and represented recurring patterns in their experiences. Ethical considerations were paramount, with approval from the King Saud University Research Ethics Committee, ensuring voluntary participation, confidentiality, and informed consent. Trustworthiness was established through a multi-pronged approach, including member checking, detailed descriptions of the context, and peer review of the analysis.

Results: Five Dimensions of Maternal Empowerment

The study revealed a rich and diverse landscape of maternal empowerment, with each mother’s perception uniquely shaped by her personal context. However, common themes emerged, coalescing into five principal dimensions of lived-experience-based empowerment (LEBE):

1. Service-Oriented Empowerment: This dimension highlights mothers’ reliance on the effectiveness and responsiveness of the service system. Empowerment here is not merely about the availability of services but their quality, speed, and consistency. Key sub-themes include the need for rapid and continuous support, the importance of an integrated and collaborative service system, the value of professional partnerships, the impact of effective service outcomes, and the necessity of conscious home-based care. Mothers expressed frustration with fragmented services, repetitive questioning, and staff turnover, emphasizing that prompt, coordinated, and respectful support significantly enhances their sense of agency.

2. Cognitive and Capacity-Building Empowerment: This dimension focuses on the acquisition of knowledge and practical skills necessary for effective caregiving. Empowerment is understood as developing parenting competency and gaining access to specialized knowledge. Mothers described how learning specific caregiving techniques and medical procedures transformed their self-perception from helpless to capable. The ability to administer medications, use assistive equipment, and understand their child’s condition independently was central to their sense of empowerment.

3. Resilience and Well-being Empowerment: This dimension addresses the psychological and emotional aspects of empowerment. Mothers defined empowerment as their ability to manage daily stress, foster family cohesion, and achieve inner contentment, often rooted in faith. The intensive demands of caregiving often lead to significant stress, and a "calm day" was perceived as a form of empowerment. The support of siblings and other family members played a crucial role in alleviating guilt and distributing caregiving responsibilities. For many mothers in Saudi Arabia, a faith-based perspective, viewing disability as a divine choice and a test, provided a profound source of inner peace and motivation.

4. Social-Community Empowerment: This dimension reflects a shift from individual experiences to broader social engagement. Empowerment is experienced through social presence, gaining a voice, and participating in community networks. Social media emerged as a powerful tool for advocacy, peer support, and challenging stigmas. Recognition and appreciation from communities and professionals also played a significant role in affirming mothers’ efforts. While charitable organizations were seen as potential sources of strength, mothers expressed a need for more structured and impactful engagement.

5. Civic Empowerment and Quality of Life: This dimension explores the civic dimensions of empowerment, extending beyond daily caregiving to controlling quality of life and participating in local decision-making. Mothers expressed a desire for autonomy in making choices about their and their children’s lives, free from undue professional control. The idea of influencing local policymaking was also a source of empowerment, offering a channel to communicate their lived realities. Furthermore, empowering their children through access to entertainment, recreation, and social integration was a key aspiration, moving beyond basic care to enriching their children’s lives.

Discussion: Redefining Empowerment in the Context of PIMDs Care

The study’s findings challenge traditional and even some contemporary disability models by proposing the concept of Lived-Experience-Based Empowerment (LEBE). LEBE is characterized as a dynamic process, shaped by the continuous interplay of personal experiences, family dynamics, service provision, and the broader social context. It moves beyond the notion of empowerment as a static grant of authority or access to resources.

Intersections and Divergences with Disability Models:

• Charity Model: LEBE starkly contrasts with the charity model, which frames disabled individuals as passive recipients of pity. Mothers in the study advocated for sustainable, rights-based support rather than sporadic charitable aid, emphasizing their role as active partners.
• Medical-Psychological Model: This model, which often marginalizes parents, is challenged by LEBE, where mothers actively seek and develop specialized knowledge, becoming experts in their children’s care. Their ability to interact effectively with service providers is contingent on this acquired expertise.
• Normalization Model: LEBE diverges from the normalization model by valuing human diversity rather than striving for conformity to societal norms. Mothers sought to integrate their children into family and community life in ways that respected their unique needs and abilities, adapting environments rather than forcing assimilation.
• Social Model: LEBE aligns with the social model’s emphasis on removing environmental barriers but extends it by focusing on the dynamic relationship between individuals and their environment. Empowerment is not just about barrier removal but about how this interaction enables mothers to act, decide, and influence.
• Rights-Based Model: While LEBE acknowledges the importance of rights, it shifts the focus from adversarial advocacy to proactive, responsive, and cooperative services. Mothers expressed a preference for systems that anticipate needs and facilitate access, reducing the constant burden of fighting for rights.
• Affirmation Model: LEBE shares the affirmation model’s focus on positive identity and pride but adds a practical dimension. Empowerment involves not only self-acceptance and visibility but also the development of competence and the ability to make effective decisions in daily care.
• Religious Model: The study highlights the significant influence of faith in Saudi Arabian culture. LEBE incorporates a religious understanding of disability as a divine test and a source of spiritual growth. This faith-based perspective, rather than leading to passivity, often serves as a powerful motivator for resilience and purposeful action.

The proposed concept of LEBE, therefore, synthesizes these insights, proposing that maternal empowerment is a multidimensional process arising from the ongoing interaction between the mother’s characteristics, her child’s needs, family relationships, the service system, and the broader social context. It is an embodied practice shaped by daily relationships and experiences, fostering competence, meaning, and the ability to influence.

Practical Implications and Future Directions

The findings of this study offer crucial insights for policymakers and service providers in Saudi Arabia and beyond. Recognizing empowerment as a lived experience necessitates a shift from a deficit-based approach to one that is responsive, inclusive, and family-centered.

• Service System Reform: There is a clear need for integrated, coordinated, and consistent service delivery. Reducing bureaucratic hurdles, ensuring seamless communication between service providers, and offering prompt and ongoing support are essential. Home-based services and flexible access models are vital for families with PIMDs children.
• Professional Training: Training for professionals should emphasize collaborative partnerships with families, valuing parental expertise, and fostering respectful communication. Understanding the unique challenges faced by mothers of PIMDs children is crucial for effective support.
• Capacity Building: Investing in knowledge and skill-building programs for mothers can significantly enhance their confidence and competence in managing their children’s complex needs.
• Social Inclusion and Recognition: Efforts should be made to foster social inclusion for children with PIMDs and their families. This includes promoting accessible recreational activities, challenging societal stigmas, and creating platforms for mothers to share their experiences and advocate for their needs.
• Faith-Based Support: Recognizing and integrating faith-based perspectives can be a powerful tool for enhancing resilience and well-being among mothers.

Limitations and Future Research

While this study provides a rich understanding of LEBE, it acknowledges certain limitations. The diversity of participants in terms of age of children and demographic characteristics, while enriching the dataset, may limit the exploration of subtle group differences. Future research could benefit from homogeneous samples and longitudinal designs to track the evolution of empowerment across different life stages. Further exploration into the impact of specific socio-economic factors and the experiences of fathers and other family members would also be valuable.

Conclusion

This research underscores that maternal empowerment in the context of caring for children with profound and multiple intellectual disabilities is a deeply personal and profoundly social journey. By moving beyond theoretical frameworks to embrace the richness of lived experience, we gain a more nuanced and effective understanding of how to support these resilient mothers and foster their capacity to lead meaningful lives. The concept of Lived-Experience-Based Empowerment offers a vital lens for re-examining disability paradigms and developing more responsive and impactful support systems.