INTRODUCTION
The tapestry of life for family caregivers of disabled children is often woven with threads of resilience, determination, and a constant quest for improving the quality of life (QoL). As disability is prevalent among Saudi children (Asiri et al., 2023), Saudi family caregivers demonstrated a poor level of QoL due to the challenges they encountered in six main domains: social, psychological, environmental, financial, education, and health. The journey is often fraught with obstacles from navigating the complexities of healthcare and educational systems to securing necessary social services and fostering a sense of community for social inclusion (Alenazi et al., 2020; Al-Otaibi et al., 2021). Collective evidence pertaining to this issue was provided by Asiri et al. (2023) via a systematic review of studies on the QoL of caregivers of disabled children in the Kingdom of Saudi Arabia (KSA). This review revealed that caregivers of disabled children in the KSA had a reduced QoL in the physical, psychological, and social relation domains.
As the current study was a call to action and a commitment to illuminate the path toward a brighter future for family caregivers of disabled children in KSA, the intricate tapestry of challenges faced by such families was illustrated in the literature review. Here, previous studies were reviewed on the types of factors reducing QoL among Saudi family caregivers of disabled children in different settings of KSA. After unraveling such challenges, the key features of good QoL for Saudi family caregivers of disabled children were identified according to KSA Vision 2030, which is the inspiring blueprint that emphasizes a thriving and fulfilling society and presents an ultimate framework to empower these families via innovative solutions (KSA Vision 2030, 2022). Hereby, the Semantic Web (SW) was proposed as a potential key to unlock a brighter future for these families. From this perspective, the study delved into the burgeoning realm of the SW and explored its potential toward a more fulfilling existence in alignment with Saudi Vision 2030. Here, existing research and potential applications were explored in healthcare, education, and social services in an attempt to demonstrate the SW’s possible contribution to empowering the family caregivers of disabled children, enhancement of social participation and inclusion, as well as improvement of access to quality services and resources. Thereafter, results presented the needs of family caregivers of disabled children in KSA for better QoL as well as the SW applications and technologies for better QoL among those families. Finally, results are discussed and conclusions are provided with implications of the findings for further research.
LITERATURE REVIEW
QoL of family caregivers of disabled children
According to KSA Vision 2030, QoL can be defined as “a holistic state of well-being encompassing physical, mental, social, and spiritual dimensions” (KSA Vision 2030, 2022). This definition aligns with the World Health Organization’s conceptualization of QoL for people with disabilities, emphasizing individual autonomy, social participation, and dignity (World Health Organization, 2001).
In KSA, disability is a critical social and economic problem. According to the demographic survey by Bindawas and Vennu (2018), the prevalence rate per 100,000 is around 2670 of any disability among children aged between 1 and 19 years (Bindawas and Vennu, 2018). Thus, challenges faced by their family caregivers should be minimized, if not eliminated, in alignment with Saudi Vision 2030 as KSA is committed to the UN Convention that focuses on protecting the interests of children with disabilities (Alqahtani, 2018).
Challenges affecting QoL among family caregivers of disabled children
Although KSA is one of the leading Arab countries taking a number of measures to promote and protect the rights of persons with disabilities, family caregivers of disabled children in KSA face unique challenges, often impacting their QoL (Maat for Peace, Development, and Human Rights, 2019). Here is a review on the previous studies conducted in KSA on the family caregivers of disabled children so as to identify the factors inflicting negative experiences on the QoL among family caregivers of disabled children.
According to Table 1, there were many studies on the QoL in the physical, psychological, and social relation domains among family caregivers of disabled children in KSA.
Previous studies showing the types of factors reducing QoL among Saudi family caregivers of disabled children.
| Researchers | Year | Setting (where the study was conducted) | Participants (Saudi caregivers of disabled children) | Conclusion related to the types of factors reducing the QoL among caregivers |
|---|---|---|---|---|
| Madani et al. | 2018 | Jeddah | 63 female parents and even siblings | Financial and emotional burdens |
| Khoshhal et al. | 2019 | Madinah | 120 parents | Severity of children’s physical health |
| Abou El-Soud et al. | 2020 | Saudi Arabia | 50 family caregivers | Severity of children’s disabilities |
| Alwhaibi et al. | 2020 | Riyadh | 299 mothers | Economic and social factors rather than psychological factors |
| Alamri et al. | 2020 | Tabuk | 100 (58 females, 42 males) | Mostly affected by psychological, environmental factors as well as physical health |
| Alenazi et al. | 2020 | Arar | 84 (16 males, 68 females) | Emotional problems and low income |
| Al-Jabri et al. | 2022 | Riyadh | 406 parents (140 males, 266 females) | Physical and social functioning, and emotional problems |
| Aman et al. | 2021 | Jeddah | 129 mothers (93 completed, 36 deceased) | Physical health, psychological and mental stress, financial burdens and problems in working places |
| Awaji et al. | 2021 | Saudi Arabia | 93 mothers | Environmental and social factors |
| Lone et al. | 2022 | Hofaf city | 106 parents (43 males, 62 females) | Mental health, physical health, and social functioning |
| AlAhmari et al. | 2022 | Riyadh | 261 parents (124 males, 137 females) | Physical, social, environmental, and psychological factors |
| Asiri et al. | 2022 | Abha | 133 parents (64 males, 69 females) | Accessibility to health services |
| Alaqeel et al. | 2022 | Riyadh | 73 parents (7 males, 66 females) | Physical health and environmental factors |
| Mahadewi and Mustikawati | 2023 | Riyadh | 110 parents | Education level of caregivers |
| Sulaimani et al. | 2023 | King Abdulaziz city | 117 family caregivers | Emotional difficulties and caregiving responsibilities |
Abbreviation: QoL, quality of life.
The physical and mental health of family caregivers can be adversely affected by the disabilities of their children, leading to a potential decline in their overall QoL (Sulaimani et al., 2023). In their study on the QoL among family caregivers of disabled children in KSA, findings revealed four factors affecting the QoL of caregivers: education level, the relationship with the child, the severity of the disability, and the presence of multiple disabled children in the family. According to the study, such factors were associated with parental role limitations. The education level of caregiver parents and their relationship with the disabled child mutually affected each other. In line with this finding, Mahadewi’s and Mustikawati’s (2023) study pinpointed that the education level of the caregivers made them unable to overcome problems in parenting, which led to caregivers’ emotional problems inflicting rupture on the emotional well-being of their disabled children. It can be inferred that caregivers with lower levels of education perceive more challenges when managing their emotional well-being and fulfilling their caregiving roles. This is due to the fact that they may have limited access to information, resources, and support systems that can help them effectively cope with emotional challenges (Sulaimani et al., 2023). Lower education levels could exacerbate the caregivers’ emotional difficulties and, in turn, increase the perceived impact on caregiving responsibilities (Mahadewi and Mustikawati, 2023).
As for the health domain, the study conducted by Sulaimani et al. (2023) referred to challenges related to the severity of the child’s disability and the presence of another child with a disability in the family. In agreement with this study, Abou El-Soud et al. (2020) concluded that the higher the severity of the children’s disabilities is, the more burdens are among family caregivers.
In addition, the financial domain for additional costs associated with children’s disabilities could breed many different stressors that lower their QoL level, such as low income, financial constraints, limited employment opportunities, and overload for long working hours as employees and as parents (Asiri et al., 2023; Sulaimani et al., 2023).
As extrapolated from the findings of the previous related studies, the QoL of those family caregivers was low due to children’s disabilities that caused a set of challenges in specific QoL domains as illustrated in Figure 1.
Challenges reducing the QoL among Saudi family caregivers of disabled children. Abbreviation: QoL, quality of life.
Figure 1 refers to the six main domains of challenges: social, psychological, environmental, financial, education, and health. They cause stress leading to the reduction of QoL among Saudi family caregivers of disabled children. The higher the severity level of the children’s disability, the higher the stress and the lower the QoL among family caregivers in the six main domains and vice versa. Such domains of challenges were used to cluster the inherent stresses and factors collected via open interviews with Saudi family caregivers to figure out their needs for better QoL accordingly.
Saudi Vision 2030 on QoL for individuals with disabilities
As Saudi Vision 2030 prioritizes QoL improvement for all citizens, KSA has launched its QoL program in 2018 in alignment with the rights of people with disabilities (KSA Vision 2030, 2022). KSA Vision 2030 advocates the rights of people with disabilities as it aims to foster a brighter future for family caregivers of disabled children owing to the crucial role of families in building a vibrant and fulfilling society. This includes a strong emphasis on improving the QoL for these families. Vision 2030 aims to create a society where these families can thrive and lead fulfilling lives. It is important to note that KSA is still in the process of implementing Vision 2030, and progress may vary across different regions and sectors (Alenazi et al., 2020). However, the commitment to improving the lives of family caregivers of disabled children is evident in the various initiatives and programs being undertaken. According to KSA Vision 2030 (2022), good QoL for family caregivers of disabled children in KSA is characterized by five key features:
Accessibility: Caregivers have easy access to specialized healthcare, education, and social services.
Empowerment: Caregivers are enabled to make informed decisions about their children’s care and education.
Social inclusion: Caregivers experience acceptance and integration within their communities.
Financial security: Caregivers have access to adequate financial resources to meet their needs.
Personal well-being: Caregivers have access to support services to address their mental and emotional needs.
Regarding the information provided by KSA Vision 2030, here is how the vision addresses the family caregivers’ needs in light of the key features ensuring good QoL in three main dimensions as follows.
Vision 2030 prioritizes fostering a more inclusive society where individuals with disabilities, including children, can fully participate in all aspects of life. This includes ensuring equal access to education, employment, and public services (KSA Vision 2030, 2022). Initiatives like the “National Transformation Program for People with Disabilities” aim to break down barriers and create a more accessible environment. This involves improving physical infrastructure, providing assistive technology, and raising awareness about disability rights (Al-Ghamdi et al., 2019).
Vision 2030 upgrades the healthcare system by making high-quality medical care accessible to all citizens including disabled children and by providing their family caregivers with the necessary support, such as respite care and home-based services (Shafiq et al., 2017). As for the education sector, it is undergoing reforms to meet the diverse needs of all learners, including those with disabilities. This includes developing inclusive learning environments, providing personalized learning plans, and training teachers in special education methods (Al-Safar et al., 2018). In addition, social service programs are being expanded and streamlined to provide family caregivers with access to financial assistance, vocational training, and other essential support services. This aims to empower such families to become self-sufficient, improve their overall well-being, and decrease their burdens of having disabled children (Al-Khalidi et al., 2017).
Vision 2030 recognizes the importance of providing families with the necessary resources and skills to effectively care for their disabled children. This includes training programs, counseling services, and peer support networks (Al-Otaibi et al., 2021). Empowering disabled children to reach their full potential is a key goal of Vision 2030. This includes providing them with access to quality education, vocational training, and opportunities to participate in their communities (Al-Qarni et al., 2021).
Semantic Web
It is important to recognize the challenges faced by caregivers of disabled children and provide them with adequate support and resources to help them cope with the stress and difficulties they face on a daily basis. In light of Saudi Vision 2030, there should be an emphasis on the importance of developing targeted interventions that can address the emotional well-being and fatigue management of family caregivers of disabled children while promoting a supportive society for better QoL (Sulaimani et al., 2023). Of these developing targeted interventions, SW could be a recommended solution for helping Saudi family caregivers of disabled children overcome many challenges as well as providing the essential facilities for better QoL since SW is the evolution of the internet from a web of pages to a web of rich linked data (Estrada-Martínez et al., 2022).
Defining SW
SW is the knowledge graph formed by combining linked data with intelligent content in order to alleviate machine understanding of content as well as processing metadata and other information objects at scale ([A], 2018). It represents an effective means of data representation in the form of a globally linked database across different content and information applications and systems (Mountantonakis, 2021, p. 15).
SW is an extensive development of the World Wide Web and is also known as Web 3.0 or the linked data web (Cambridge Semantics, 2023). It provides a common framework in which a mesh of data in web pages is structured, tagged, and associated in such a way that makes data easily processed by machines instead of human operators in order to be shared and reused across applications, enterprises, and community boundaries (Gurunath and Debabrata, 2022).
SW technologies
SW content structures form a reliable graph, or map of knowledge, as a necessary basis for true artificial intelligence beyond basic natural language processing and natural language understanding ([A], 2018). According to [A], (2018), the employment of SW technologies helps get publishers closer to globally machinable sets of content.
According to Cambridge Semantics (2023), SW consists primarily of three technical standards that have been now formalized and ratified:
Resource Description Framework (RDF): It refers to the data modeling language for the SW. All information based on SW is stored and represented in the RDF.
SPARQL Protocol and RDF Query Language (SPARQL): It is the query language of the SW and is specifically designed to query data across various systems.
Web Ontology Language (OWL): It comprises the schema language, or knowledge representation language, of the SW. It enables the individual to define concepts in a way that can be reused as much and as often as possible. Composability indicated the careful definition of each concept in a way that it can be selected and assembled in various combinations with other concepts as needed for many different applications and purposes.
From a technical viewpoint of Cambridge Semantics (2023), SW technologies of RDF, SPARQL, and OWL are used to enable the encoding of semantics with the data to formally represent metadata, relationships between entities, and categories of things. Thus, by supporting the inclusion of semantic content in web pages, the SW targets the conversion of the presently available web of unstructured documents to a web of information/data.
Functions of SW
To the best of the researcher’s knowledge, research was scarcely done on highlighting the promising potentials of SW in the field of special needs in relation to the QoL of family caregivers. Here is a review of the related previous studies showing the potentials of SW to improve the QoL in each of the following four essential functions.
As a method of publishing structured data for facilitation of sharing, linking, searching, and re-use, SW adopts the method of linked data (Gurunath and Debabrata, 2022). As explained by Mountantonakis (2021, pp. 38-44), the linking and integration of data become more significant owing to the continuous increase in their number and size that make seemingly simple tasks like finding all the available information for an entity challenging.
By using ontologies for rich data representation, the SW can capture and represent complex information about special needs, services, and resources. In this respect, SW technologies can make it easier for caregivers to find and access relevant information online. Through linked data and knowledge graphs, semantic technologies can integrate information from various sources into a unified framework, enabling precise information retrieval for family caregivers about the child’s condition, treatment options, coping strategies, and available support services.
SW leads to more effortless and smarter individual experiences by giving content the ability to understand and present itself in the most useful forms matched to the individual needs (Ameen, 2015). Accordingly, SW technologies can be used to personalize the information and resources presented to caregivers based on their unique circumstances and needs. From this perspective, Ulman (2022) conducted a study to construct an ontological framework based on the OWL and RDF technologies of SW in order to create an assistive social network for organizations and agents, which identifies the need for assistance for those with disabilities. In this study, an assistive social network for caregivers was successfully created by linking the assisted actions with the assister actions. Findings revealed the effectiveness of SW for personalizing the assistance provided to disabled individuals and their caregivers.
SW’s ontology-based reasoning formalizes the knowledge about special needs conditions, services, and resources, facilitating intelligent search and personalized care plans as well as personalized recommendations in light of the type and the level of their children’s disabilities (Al-Harbi et al., 2017). Accordingly, by analyzing user data and preferences, SW applications can provide personalized recommendations for educational programs, healthcare services, and social activities, empowering family caregivers to make informed decisions.
By making data more interoperable, SW can help coordinate care among various providers and across systems, including healthcare (Hammad et al., 2020). According to the findings of Hammad et al.’s (2020) study in Jordan, coordinated information systems can reduce the expenses of treatment and improve personal life satisfaction as well. In this regard, Coleman et al. (2022) conducted a study on the future vision of QoL among family caregivers and their disabled children. In their study, they referred to the promises of utilizing the merit of coordinated care in order to reach the healthcare goals of safe, efficient, effective, equitable, timely, and patient-centered care, ensuring equity at all levels of the healthcare system from clinical decision-making to designing and implementing programs and policies.
On the side of coordinated educational care, SW can collaborate to the lifelong learning process, enabling opportunities for improved data literacy and a worldwide social impact as indicated in Sigalov’s and Nachmias’s study (2023). In their study, they concluded that SW could offer learning opportunities stem in part from the ability to query data, ask questions that were difficult to answer in the past as well as visualize query results, for example on a timeline or a map, which, in turn, helps users make sense of the data and draw additional insights from it. They also pinpointed that the intersection of SW technologies and coordinated educational care is a relatively unexplored area, and further research is needed.
Virtual communities of practice (VCoPs) are internet frameworks where members collaborate and share knowledge. They can provide caregivers with information and peer support, helping them meet their needs (Romero-Mas et al., 2020). Romero-Mas et al. (2020) state that participation in a VCoP can positively impact caregivers’ QoL. In this regard, a study was conducted by Romero-Mas et al. (2021) on the use of VCoPs to improve the QoL of family caregivers of disabled individuals. Their study recommended considering VCoPs to enhance family caregivers’ QoL. It also suggested that greater levels of participation in virtual communities can help share knowledge, disseminate ideas quickly, and provide emotional support among family caregivers. Participants of the study also reported their positive experience owing to the usefulness of the VCoP tool as well as their enhanced ability to manage their own participation, meet peers, and, in turn, feel less lonely. In addition, the positive impact of VCoPs on the QoL’s physical domain was also confirmed.
SW technologies of RDF, SPARQL, and OWL are helpful for grouping the people sharing the same interests (Hitzler, 2021). They allow to build a decentralized and easily extensible semantic network in a modular fashion for the built environment of communities (Pauwels et al., 2018). According to Hitzler (2021), these technologies can be exploited to build semantic-based communities for sharing information, job seeking, consistency checking, inferencing, and running more complicated queries unlike traditional search engines or social ones. This not only improves the interaction with the environment but also enhances the collaboration and interaction among the community members (Pauwels et al., 2018).
Daoud et al. (2021) conducted a study in Egypt aiming to create a new semantic social community called Socialpedia, which linked the already existing social public information to the newly public ones. This information was linked with different information on the web using technologies of SW to construct a new immense data container. The findings proved the positive impact of building semantic communities on promoting an easily processable data container as such communities could support all popular functionalities of social networking websites besides the enhanced features of the SW, providing advanced semantic search that acts as a semantic search engine. SW can facilitate the creation of online communities where caregivers can connect with others in similar situations. These communities can provide emotional support, practical advice, and a sense of belonging.
RESEARCH AIM AND QUESTIONS
By harnessing the power of the SW, we can navigate the labyrinth of challenges and weave a tapestry of hope, resilience, and a life lived to its fullest potential. In this regard, the current study aimed to investigate the potentials of utilizing SW to empower their family caregivers by improving the QoL level in alignment with Saudi Vision 2030. Thus, it attempted to bridge the gap between the promise of the SW for better QoL and the real life of Saudi family caregivers of disabled children in 2030.
Accordingly, this study was guided by four research questions:
What are the challenges that could reduce the QoL among family caregivers of disabled children in KSA?
What are the needs of family caregivers of disabled children in KSA for better QoL?
What is the KSA Vision 2030 that addresses the needs of family caregivers of disabled children?
What are the promising potentials of SW that can align with Saudi Vision 2030 to address such needs for better QoL among family caregivers of disabled children?
METHODS
Participants
A probability simple random sampling was used to recruit the participants of the study from three Saudi cities: Jeddah, Madinah, and Riyadh. Eligible 346 participants were 125 male and 221 female caregivers aged 20 years and above, caring for mentally and physically and sensory disabled children. They were invited to needs assessment open interviews.
Ninety-one university specialists in the fields of psychology (18), quality management (22), instructional technology (19), and special education (32) were recruited as participants to provide their responses to the SW-QoL questionnaire.
Research design
The descriptive method was used in this study for the analytical review of the studies related to the QoL among family caregivers of disabled children in the context of Saudi Vision 2030 as well as the studies related to the SW technologies and applications for better QoL among family caregivers of disabled children.
Instruments and data collection
Needs assessment open interviews
These interviews were conducted to explore the challenges and needs of Saudi family caregivers of disabled children in depth. Questions of such interviews were prepared around the stresses experienced by caregivers in each of the six domains of challenges in addition to their needs for better QoL accordingly. The questions were posed to 346 Saudi family caregivers (125 males and 221 females) of children with different disabilities (physical, sensory, and mental). Interviews were administered in three Saudi cities: Jeddah, Madinah, and Riyadh. Data collected from such interviews were added to the needs inventory elicited from the literature review of KSA Vision 2030 and the related studies on the QoL of family caregivers in KSA. The inventory was submitted to a jury committee in the fields of Special Education and Instructional Technology for content validity. Special Education jurors checked the relevance of the challenges’ appropriateness of the included needs to family caregivers of disabled children in the context of Saudi Vision 2030. Instructional Technology jurors checked the needs that could be fulfilled by utilizing SW. After implementing the recommended modifications, the final form of the needs inventory was employed in the SW-QoL questionnaire aiming to provide insights into how SW applications and technologies could potentially address these needs for better QoL in the context of Saudi Vision 2030.
SW-QoL questionnaire
Prepared by the researcher to answer the fourth research question, this questionnaire aimed to determine the promising potentials of SW functions that align with Saudi Vision 2030 to address such challenges for better QoL among family caregivers of disabled children in the six domains of challenges. It is divided into two parts. Items in part 1 were developed according to the review of literature and the related studies as well as the data in the final form of the needs inventory. It consists of a closed-ended list of 42 statements for the promising potentials of each of the four essential SW functions (information accessibility, personalization of resources, community building, and care coordination) in the six domains of challenges (social, psychological, environmental, financial, education, and health). It is a 5-level scale questionnaire: (strongly agree = 5, agree = 4, neutral = 3, disagree = 2, and strongly disagree = 1). Part 2 was left open for further notes, suggestions, or considerations.
Content validity and internal consistency validity were investigated. For content validity, the questionnaire was submitted to a jury committee of quality experts at University of Ha’il. Jurors’ modifications were considered. To check the validity of the questionnaire’s internal consistency, a correlation coefficient was estimated for the mean score of each level in relation to the total score of the whole questionnaire as indicated in Table 2.
Validity of internal consistency for the SW-QoL questionnaire.
| The domain | Statistical data | Value |
|---|---|---|
| R value | 0.819 |
| Significance | 0.000 | |
| Number of piloting participants | 28 | |
| R value | 0.754 |
| Significance | 0.000 | |
| Number of piloting participants | 28 | |
| R value | 0.851 |
| Significance | 0.000 | |
| Number of piloting participants | 28 | |
| R value | 0.890 |
| Significance | 0.000 | |
| Number of piloting participants | 28 | |
| R value | 0.791 |
| Significance | 0.000 | |
| Number of piloting participants | 28 | |
| R value | 759 |
| Significance | 0.000 | |
| Number of piloting participants | 28 |
Abbreviation: SW-QoL, Semantic Web-quality of life.
As shown in Table 2, there is a statistically significant correlation at the 0.01 level between each level’s score and the total score of the questionnaire. This reveals the questionnaire’s high-level validity of internal consistency.
Regarding the reliability of the questionnaire, Cronbach’s alpha value was estimated for each of the questionnaire’s levels as well as the whole questionnaire as shown in Table 3.
Reliability coefficient values for the SW-QoL questionnaire.
| Domains | Reliability coefficient values |
|---|---|
| Social | 0.978 |
| Psychological | 0.977 |
| Environmental | 0.977 |
| Financial | 0.977 |
| Education | 0.978 |
| Health | 0.978 |
| Total value | 0.977 |
Abbreviation: SW-QoL, Semantic Web-quality of life.
As displayed in Table 3, all reliability coefficient values are high. This, in turn, verifies the reliability of each level in the questionnaire as well as the whole questionnaire.
After checking the validity and reliability, the final form of the questionnaire was submitted to specialists in the fields of special education, psychology, quality management, and instructional technology.
RESULTS
Needs of family caregivers of disabled children in KSA for better QoL
The needs assessment open interviews provided the ultimate needs of Saudi family caregivers in light of the six domains of challenges as shown in Table 4.
Needs among Saudi family caregivers of disabled children in light of challenge domains, their stresses, and factors.
Table 4 displays the stresses experienced by Saudi family caregivers of disabled children classified into six domains and accompanied by factors resulting in such stresses. In light of such domains of challenges, the caregivers’ needs were provided in the context of Saudi Vision 2030.
According to the data in Table 4, social challenges can lead to chronic stress, which can negatively impact the caregiver’s physical health, while psychological ones can have significant impacts on the caregiver’s emotional health. Since the low education level of caregivers can make the psychological challenges daunting, both domains of social and psychological challenges can disrupt the caregiver’s mental health as revealed by 91% of the caregivers in the interviews (n = 315).
As for the environmental challenges, time commitments were associated with caregiving demands as a source of stress and burden experienced by family caregivers. In addition to mental fatigue and physical disruptions, environmental challenges can inflict emotional disorders on the life of caregivers as indicated by 82% of the interviewees (n = 284). In the interviews, family caregivers reported that current services provided inadequate support for the physical demands.
It is generally recognized that financial stresses amplify the challenge level for caregivers of disabled children as extrapolated from the responses of 79% of the interviewees (n = 273). From this perspective, financial stresses can lead to negative outcomes related to physical, mental, and emotional health. It is important to note that these challenges can vary greatly depending on the type of child’s disability and caregivers’ financial capacities. During the open interviews, family caregivers pinpointed that the current services provided inadequate support for the financial burdens of lifelong caregiving.
The educational challenges were daunting as 87% of caregivers (n = 301) reported, in the interviews, the absence of the supporting educational services tailored to the children’s type and level of disabilities as well as the limited channels of communications with specialist educators. Thus, caregivers suffered from deteriorated mental and/or physical health as they were obliged to navigate the whole education system and look for the needs of their disabled children within complex and scattered information in a hope of finding the appropriate educational services and support that meet the specific needs of their disabled children.
Finally, the health domain is considered a critical challenge as it is the ultimate care that families focus on providing to their disabled children apart from the type or level of their disabilities. Most of the caregivers (n = 266) attributed their stresses to disorders in the emotional, mental, and physical health as they could hardly bear the constant demands of caregiving in addition to the difficulties they faced to meet the tailored medical needs of their disabled children in light of the types and level of their disabilities due to limited communication channels with specialist healthcare providers.
To sum up, stress level and type among family caregivers of disabled children varied from one domain to another. However, some domains of challenges share some stresses but for different factors. Challenges of the six domains had a negative impact basically on the physical, emotional, and mental health of caregivers. Family caregivers’ needs, in the context of Saudi Vision 2030, were mainly based on the feasibility, accessibility, and availability of support services and resources in the six domains in a way that could help alleviate many of these stresses.
SW applications and technologies for better QoL among family caregivers
The SW-QoL questionnaire pinpointed the promising potentials of the four essential functions of SW technologies (information accessibility, personalization, community building, and care coordination) that could help improve the QoL level in the six domains (social, psychological, environmental, financial, education, and health) among family caregivers of disabled children in KSA as shown in Table 5. Note that the total number of respondents is 91.
The promising potentials of the four essential functions of SW and QoL among Saudi family caregivers of disabled children.
| SW functions | Domains | Promising potentials for caregivers | Number of respondents who | ||||
|---|---|---|---|---|---|---|---|
| Strongly agree (5) | Agree (4) | Neutral (3) | Disagree (2) | Strongly disagree (1) | |||
| |||||||
| Information accessibility |
| Improving access to social counseling | 78 | 13 | Nil | Nil | Nil |
| Facilitating real-time sharing and collaboration | 58 | 20 | 13 | Nil | Nil | ||
|
| Improving access to psychological counseling | 78 | 13 | Nil | Nil | Nil | |
| Providing emotional support | 19 | 11 | 38 | 21 | 2 | ||
|
| Facilitating access to needed environmental resources | 73 | 18 | Nil | Nil | Nil | |
|
| Facilitating access to job opportunities | 78 | 13 | Nil | Nil | Nil | |
| Facilitating access to social and psychological guidance via streamlining service delivery and reducing administrative burdens | 81 | 10 | Nil | Nil | Nil | ||
|
| Facilitating access to relevant educational services | 91 | Nil | Nil | Nil | Nil | |
| Facilitating access to relevant educational resources | 91 | Nil | Nil | Nil | Nil | ||
|
| Facilitating access to relevant health services | 91 | Nil | Nil | Nil | Nil | |
| Facilitating access to relevant health resources | 91 | Nil | Nil | Nil | Nil | ||
| Personalization of resources |
| Analyzing and comparing data of social services based on the type and level of disability | 91 | Nil | Nil | Nil | Nil |
|
| Analyzing and comparing data of psychological services based on the type and level of disability | 91 | Nil | Nil | Nil | Nil | |
|
| Analyzing and comparing data of environmental resources based on individual needs | 11 | 13 | 50 | 13 | 4 | |
| Optimizing resource allocation for service efficiency to both families and service providers. | 9 | 11 | 48 | 21 | 2 | ||
|
| Personalizing work opportunities | 91 | Nil | Nil | Nil | Nil | |
| Analyzing and comparing caregiver’s financial data to deliver financial assistance | 91 | Nil | Nil | Nil | Nil | ||
|
| Analyzing and comparing educational data to tailor their services and resources based on individual needs | 91 | Nil | Nil | Nil | Nil | |
|
| Analyzing and comparing data for recommendation of the health services and resources based on individual needs | 91 | Nil | Nil | Nil | Nil | |
| Community building |
| Building communication channels with social workers | 88 | 3 | Nil | Nil | Nil |
| Connecting families facing similar social challenges | 91 | Nil | Nil | Nil | Nil | ||
|
| Building communication channels with psychiatrists | 79 | 12 | Nil | Nil | Nil | |
| Connecting families having similar psychological problems | 91 | Nil | Nil | Nil | Nil | ||
|
| Building communication channels with caregivers in rural or remote areas | 91 | Nil | Nil | Nil | Nil | |
| Building communication channels with subsidized environmental resources | 56 | 19 | 9 | 4 | 2 | ||
|
| Building communication channels with subsidized resources for specialized services in education and healthcare | 91 | Nil | N | Nil | Nil | |
|
| Building communication channels with education services | 86 | 5 | Nil | Nil | Nil | |
| Connecting families receiving similar educational services | 91 | Nil | Nil | Nil | Nil | ||
|
| Building communication channels with health services | 86 | 5 | Nil | Nil | Nil | |
| Connecting families of children with similar health disorders | 91 | Nil | Nil | Nil | Nil | ||
| Care coordination |
| Coordinating plans for equal accessibility to subsidized social support | 91 | Nil | Nil | Nil | Nil |
| Coordinating plans for social services to reduce overlaps | 91 | Nil | Nil | Nil | Nil | ||
|
| Coordinating plans for equal accessibility to subsidized psychological support | 91 | Nil | Nil | Nil | Nil | |
| Coordinating psychological services to reduce overlaps | 91 | Nil | Nil | Nil | Nil | ||
|
| Coordinating health and education care systems | 91 | Nil | Nil | Nil | Nil | |
| Managing time consumption | 42 | Nil | Nil | 49 | Nil | ||
|
| Coordinating plans for equal accessibility to subsidized resources for child’s healthcare | 91 | Nil | Nil | Nil | Nil | |
| Coordinating plans for equal accessibility to subsidized resources for child’s education | 91 | Nil | Nil | Nil | Nil | ||
|
| Coordinating educational systems for equal access to resources based on child’s needs | 91 | Nil | Nil | Nil | Nil | |
| Coordinating educational systems to reduce overlaps | 91 | Nil | Nil | Nil | Nil | ||
|
| Coordinating healthcare plans for equal accessibility to resources | 91 | Nil | Nil | Nil | Nil | |
| Coordinating healthcare plans to reduce service overlaps | 91 | Nil | Nil | Nil | Nil | ||
Abbreviations: SW, Semantic Web; QoL, quality of life.
According to Table 5, 85% of respondents strongly agreed (n = 78) to the potential of the function of information accessibility to facilitate family caregivers’ access to information via linked data. In this function, 23 respondents expressed disagreement but only for providing emotional support in the psychological domain.
As for the function of personalization of resources, all respondents strongly agreed to the ability of SW technologies to tailor the information provided to the family caregivers according to their needs and in light of the type and the level of their children’s disabilities. Here, 63 respondents suggested that the family caregivers submit their disabled children’s data and preferences to the target online SW-based databases so that SW applications can deliver personalized recommendations for educational programs (n = 91), healthcare services (n = 91), financial assistance (n = 91), and social activities (n = 91). This way, family caregivers are enabled to make informed decisions. In this function, only few disagreements were detected among 18.7% of respondents for analyzing and comparing data of environmental resources as well as among 25.3% of respondents for optimizing resource allocation for service efficiency. However, neutral responses were fairly high as it was almost higher than 50% of respondents. Thus, these statements were excluded from the list of possible potentials of SW for improving QoL in the domain of environmental challenges.
Building SW-based online virtual communities provides families with a safe space to connect with others who understand their challenges, share experiences, and offer peer-to-peer support, combating social isolation and improving their overall well-being. In respect to this function, the vast majority of respondents strongly agreed to the SW potential to help caregivers build communication channels with social workers (n = 88), psychiatrists (n = 79), medical professionals (n = 86), and educators (n = 86) for advice and guidance as well as to get connected with other families with the similar social and psychological conditions and issues (n = 91). Here, the physical, mental, and psychological health is maintained as suggested in the additional notes by those respondents.
For the function of coordination, all respondents expressed their strong support to the fact that SW can empower the family caregivers’ potentials in the financial, education, and health domains by providing better-coordinated care plans and reducing service overlaps. The only statement that was rejected by 54% of respondents (n = 49) was the management of time consumption in the domain of environmental challenges. Thus, it was excluded from the list of promising SW potentials.
Finally, three additional considerations were noted by 87% of respondents (n = 79) in part 2 of the questionnaire: (i) scalability and sustainability of SW solutions are crucial for long-term impact and sustainability of interventions, (ii) cost-effectiveness needs further evaluation to ensure accessibility for all families, and (iii) ethical considerations regarding data privacy and security must be addressed.
Implications
In light of the achieved results mentioned earlier, the following are the findings for possible implications to leverage the power of utilizing the SW in a way that may help Saudi family caregivers of disabled children overcome their challenges via the four main SW functions and, in turn, guarantee an improved QoL level: information accessibility, personalized resources, VCoPs, and coordinated care.
Information accessibility could be facilitated via linked data for the relevant social and psychological counseling, educational resources, healthcare services, and employment opportunities family caregivers’ access to information. This could help open channels of communications with specialists and advisories in the six domains of challenges.
Imagine a world where families can access personalized information and resources tailored to their special needs (Sheth et al., 2012). Resources can be personalized when family caregivers submit their disabled children’s data and preferences to the target online SW-based databases so that semantic reasoning engines can analyze vast amounts of data and compare different care options, educational programs, and financial support schemes based on individual needs and evidence. Here, the SW offers a unique architecture for information organization and retrieval. It transcends the limitations of traditional web pages by enriching data with meaning through ontologies, essentially creating a web of interconnected knowledge (Berners-Lee et al., 2001). This interconnectedness, promoted by the power of reasoning engines, has got the potential to efficiently transform the landscape for family caregivers of disabled children. As SW search engines can understand the specific needs of each family (considering their child’s condition, location, and language), SW applications can deliver personalized recommendations to overcome the challenges in the six domains of challenges as they become able to make informed decisions.
Building virtual communities could help promote social inclusion and active citizenship participation since they foster peer-to-peer support and sharing of knowledge and experiences in a way that combats social isolation and empowers families. This function can also alleviate the financial burdens of caregivers by helping them get connected with communities of subsidized resources for specialized educational services, medical equipment, and medication as strongly confirmed by all respondents. Regarding the environmental domain, these virtual communities can help caregivers in remote or rural areas benefit from the available social support, medical services, and educational resources as strongly approved by all respondents. This is helpful in the reduction of mental and physical fatigue as well as emotional disorders among the family caregivers.
The function of coordinated care could connect the healthcare systems at all levels all over the country so that the unaffluent family caregivers could equally have their disabled children reach their target-subsidized healthcare centers. Healthcare providers can seamlessly share medical data, collaborate on treatment plans, as well as ensure coordinated and effective care (Shafiq et al., 2017). The same goes with education services and resources in all grades and institutions all over the country as SW may enable caregivers to query data and ask questions that were difficult to answer in the past as well as visualize query results. Educational platforms can consider the individual differences and adapt to individual learning styles as well as overcome challenges and foster inclusive learning environments (Al-Safar et al., 2018). Regarding social service directories, they can be powered by SW technologies in order to connect families with relevant resources from financial assistance to respite care and vocational training programs (Al-Khalidi et al., 2017). This may result in improving care quality and reducing stress for families.
DISCUSSION
QoL of Saudi family caregivers of disabled children
Based on the literature review of KSA Vision 2030 and the available related studies conducted on the QoL among caregivers of disabled children in KSA as well as the findings of the needs assessment open interviews, the following are three main pivots for the KSA Vision 2030 initiatives in the QoL program of building a thriving society that meets the needs of family caregivers and their disabled children in a way that allows for improvement in their QoL:
Social participation and inclusion:
Access to quality services and resources:
Building a knowledge-based economy by leveraging technology and data to improve service delivery and access to information.
Expanding access to necessary healthcare, education, and social support systems.
Facilitating access to specialized services and resources for quality rehabilitation including access to healthcare professionals, therapists, and social workers.
Reducing service duplication via information sharing.
Empowerment and autonomy:
Enhancing autonomy through informed decision-making.
Embracing full potential through support systems that provide effective care via training, financial assistance, and peer-to-peer networks to equip families with the skills and resources they need to navigate challenges and thrive.
Supporting active citizenship and participation in all spheres of life.
Promoting educational opportunities that cater to the diverse needs of disabled children to foster their learning and development.
Providing economic security and financial stability through adequate social support, employment opportunities for family members, and affordable access to essential services.
Ensuring physical, mental, and emotional well-being by developing a comprehensive disability policy and legal framework that preserve the equal rights and access to opportunities.
From the perspective of the needs assessment open interviews, findings revealed that dealing with child behavioral challenges and/or medical needs frequently led to stress among family caregivers. Other factors related to stress among family caregivers included financial burden as in studies conducted by Madani et al. (2018) and Aman et al. (2021), relationship strain as in a study by Lone et al. (2022), employment/activity constraints, low self-efficacy, physical demands of caregiving, concerns about the future, and perceived social isolation as concluded by Awaji et al. (2021). These challenges with their inherent factors reduced the QoL among Saudi caregivers of disabled children. By identifying the challenges and exploring the inherent stresses with their factors, caregivers’ needs were listed based on the literature review and the responses of the caregivers in the needs assessment open interviews in the context of Saudi Vision 2030. By fulfilling these needs, stresses will be reduced and, in turn, QoL will be improved among caregivers of disabled children as stated by Maat for Peace, Development, and Human Rights (2019).
As long as these needs are built on the accessible services and resources in the six domains of challenges as shown in Table 4, there could be an intervention to address those needs by managing the fatigue caused by stress for better QoL as pinpointed by Sulaimani et al. (2023). In this respect, SW technologies and applications could be a solution to lower such challenges and, in turn, improve the QoL among Saudi family caregivers of disabled children.
SW promising potentials of improved QoL among family caregivers
As a powerful tool for alleviating the family caregivers’ challenges, the findings of the SW-QoL questionnaire displayed in Table 5 highlighted the promising potentials of SW technologies for better QoL if utilized to meet the needs of Saudi family caregivers of disabled children in the context of Saudi Vision 2030. By leveraging the SW, we can improve the QoL among Saudi caregivers in different ways:
Improve access to information and resources: Semantic search engines can provide families with personalized and targeted information about relevant services, support groups, and financial aid, based on their specific needs and location. This potential is in line with Mountantonakis’s (2021) study.
Bridge service gaps: Semantic technologies can connect data from different healthcare providers, government agencies, and non-profit organizations, streamlining service delivery and reducing administrative burdens for families. This is in line with the conclusions of Sigalov’s and Nachmias’s (2023) study.
Empower families through informed decision-making: Semantic reasoning engines can analyze and compare different care options, educational programs, and financial support schemes, enabling families to make informed choices based on individualized needs and evidence. The potential of this function was stated by Al-Harbi et al. (2017).
Foster social inclusion and community building: Semantic platforms can facilitate the creation of online communities and support groups for families, combating isolation and promoting peer-to-peer learning and resource sharing. This is in agreement with the findings of the studies conducted by Romero-Mas et al. (2021) as well as Daoud et al. (2021).
By harnessing the power of the SW, we can empower families with disabled children in KSA, improve access to resources, strengthen social support networks, and ultimately contribute to a more inclusive and equitable society, aligning with the aspirations of KSA Vision 2030.
CONCLUSIONS AND SUGGESTIONS
Conclusions
For Saudi family caregivers of disabled children, good QoL encompasses access to appropriate healthcare, education, and support services. It guarantees financial security and social safety nets as well as promotes positive social interactions and community inclusion. In addition, it empowers the mental and physical well-being of all family members. To meet such needs for better QoL among caregivers, SW can be a technology solution for empowering Saudi family caregivers.
SW allows for the presentation of the online content in a way that can be understood, connected, and remixed by machines via four key functionalities that work as promising potentials for improving QoL. First, ontologies are formal representations of knowledge that define the meaning of concepts and relationships, enabling machines to understand the context of information. Second, linked data refer to interconnected datasets that allow information to be shared and accessed across different platforms and domains. Third, reasoning engines are software systems that use ontologies and linked data to infer new knowledge and make recommendations. Fourth, semantic search engines are capable of understanding the meaning of queries and providing relevant and contextualized results.
With its ability to structure and tag data in a way that can be read directly by computers, SW can potentially improve the QoL among family caregivers of disabled children in several ways that fulfill the promises of the QoL program in Saudi Vision 2030:
Personalized information retrieval: Semantic search can provide family caregivers of disabled children with tailored information about available resources, services, and support groups.
Enhanced accessibility and interoperability: Semantic technologies can bridge information gaps between different service providers, making data more accessible and usable for caregivers.
Improved decision-making: Semantic reasoning can help families analyze and compare different options for care and support, leading to informed decisions.
Empowering communities: Semantic platforms can facilitate peer-to-peer support, knowledge sharing, and community building among families with disabled children.
Improved service coordination: SW can facilitate seamless collaboration and information sharing between different service providers, ensuring coordinated care and support for caregivers of disabled children.
To sum up, KSA Vision 2030’s commitment to improving the lives of families with special needs children presents a significant opportunity for positive change. By leveraging the power of the SW, we can address the existing challenges and unlock new possibilities for enhancing their QoL. By empowering families with information, connecting them to resources, and fostering support networks, the SW can play a crucial role in building a more inclusive and thriving society for all, aligning perfectly with the aspirations of KSA Vision 2030. However, it is important to note that while the SW holds considerable promise, its application in this context would need to be designed and implemented carefully to ensure that it meets the needs of caregivers and respects their privacy and security.
Suggestions
As long as this research is a call for action, the following are suggestions for further research needed for the employment of SW in the field of special needs for QoL enhancement in different domains:
SW applications for improving the quality of education among special needs learners.
Enhancing the quality of healthcare among disabled children via SW personalization.
Building an ontology-based VCoP to improve the QoL among caregivers of disabled children in the emotional and educational domains.
SW based on linked data framework for supporting the quality services in education and healthcare among special needs children.