Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story
Abstract
1. Introduction
Theoretical Framework
2. Materials and Methods
2.1. Study Design
2.2. Philosophical Assumptions
2.3. Positionality Statement
2.4. Participant Recruitment
2.5. Eligibility Criteria
2.6. Data Collection
2.7. Data Analysis
2.8. Study Quality
2.9. Ethical Considerations
3. Results
3.1. Participant Characteristics
3.2. Themes
3.2.1. Theme 1: The Complexity of the Caring Journey
My husband made the heartfelt decision to sell his car to help get our daughter a wonderful new wheelchair. As a result, I’ve put my master’s studies and work on hold to focus on supporting my son and meeting his needs. It’s a big change, but I truly believe it’s the right thing to do for our family needs.(M05)
I regularly impose a significant emotional burden on myself concerning my son’s condition. Despite my persistent efforts to provide him with the best possible support and care, I can’t shake the feeling that I am falling short of his needs. This thought frequently occupies my mind, intensifying my awareness of the heavy responsibilities I am not doing enough for him weighs heavily on my shoulders, often leading to moments of self-doubt and anxiety about my parenting capabilities.(M12)
My personality changed after having my child (child with CP). I am showing more sympathy.(F04)
My child is the key to my happiness in this life and for Jannah (Heaven).M10
There are many complex things in my life as a single mom for a child with a disability … like my psychological and financial states that suddenly improve because of my child. I didn’t notice them before, but now I feel it because of Allah then my child… before I couldn’t imagine that I would buy a car, but suddenly I bought one.M12
3.2.2. Theme 2: The Value of Family and External Support
I wish if my husband and my children could help me more…I wish my husband take care of my son’s appointment. My son does not like to go with his father because he just handles him to a therapist and does not sit with him in physiotherapy sessions… also, we don’t go to my family in-laws because they don’t ask about my son or let him feel welcoming or accepted.(M10)
“Thank Allah, we have increased in intimacy….my husband and I have become a united force. We tirelessly seek the best options for her, aiming to admit her to top-notch facilities and ensure she has all the necessary equipment. Overall, we’ve become diligent in our quest to provide for her.”(M05)
My brothers and in-laws ask about my child and pray for him… I would be happier if my sister-in-law could take my son and watch him for a short time, as we live close by, to allow me to relax and have some personal time.(M04)
As a community, we are indeed very cooperative, honestly. We have changed a lot; we are not like before… Now, people have come to like individuals like this (children with CP). They don’t leave them; they help them. For example, if we go to parks, people give my daughter a gift, and there are no looks or anything.(F01)
My son was playing, and some children came to play with him in the park. But they said: You are limping. He came to me and said: Mom, I’m not limping. I told him, ‘Sweetie, you’re not limping, but your leg just needs a little strengthening, and you need to continue to work on your exercise plans.(M10)
Since my son’s diagnosis, I have received little guidance on our (parents and the child) rights or how to navigate them. Most of what I have learned has come through my own research or the shared experiences of other mothers.(M03)
3.2.3. Theme 3: The Quality of Educational and Healthcare Services
While attending my daughter’s school, I observed a lack of accessibility features. This is particularly concerning as accessibility is important for all students, including those with disabilities. While the school has attempted to install accessible toilets for children with special needs, these facilities unfortunately do not meet my daughter’s specific needs.(M11)
I wish someone had informed me about the diagnosis sooner. As a premature baby, he had regular check-up appointments every month, yet no one has delivered a definitive diagnosis. This ongoing uncertainty is concerning and frustrating and has led my wife to explore other traditional ways…. we visited an old lady in (village) who specialized in herbal treatments.(F09)
During my son’s PT sessions, I often fall asleep on the couch because I sometimes come directly from work…. I’m present, observing and asking questions, but no one explains why certain exercises are done or which part of the body they target I wish there were educational courses for parents about physical therapy and exercises, and my boss gave me a flexible schedule.(M10)
I go to a private clinic in Riyadh twice every month (400 kilometres away from their city) with my wife and my child, as many good clinics are in Riyadh, and one session … I really feel embarrassed every time I ask for leave from my supervisor at my job because most of my son’s appointments are during work hours.(F07)
3.2.4. Theme 4: Recommendations for Community-Based Programming, Resources, and Policies
Due to the heavy curriculum and tightly packed schedule, my son’s educational needs and capabilities are often overlooked. Sometimes, my son would experience a muscle spasm at school, and neither his father nor the teachers knew how to respond, so they would call me.(M10)
When I came to my son’s appointment, I saw the healthy people occupying the parking space that is allotted to disabled people and their families, which can lead us to park in another spot and walk… when my son arrived at the clinic, he felt tired. Accessible parking spaces are essential for families with children with disabilities. It’s important to have clear policies in place to prevent misuse by others in the community.(M10)
“When everyone-family, community, government works together, we can build a society where all members, regardless of their abilities, can thrive and contribute meaningfully”(F08).
4. Discussion
4.1. Strengths and Limitations
4.2. Practical Implications
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Variable | n (%) |
---|---|
Parents (caregivers) | |
Gender | |
Female | 6 (50) |
Male | 6 (50) |
Marital status | |
Married | 11 (91.7) |
Separated | 1 (8.3) |
Level of education | |
High school or less | 7 (58.3) |
Bachelor’s degree | 5 (8.3) |
Monthly family income (Saudi riyals (SAR)) | |
<6000 | 6 (50) |
≥6000 | 6 (50) |
Children with CP (care-recipients) | |
Gender | |
Female | 4 (33) |
Male | 8 (67) |
CP type | |
Hemiplegia | 1 (8.3) |
Diplegia | 7 (58.3) |
Quadriplegia | 4 (33.4) |
Motor skill | |
GMFCS 1 II | 5 (41.67) |
GMFCS IV | 3 (25) |
GMFCS V | 4 (33.33) |
Mean (SD 2) | |
Age of parents, years | 45 (11) |
Age of children, years | 8 (4) |
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Alqahtani, A.; Sahely, A.; Aldersey, H.M.; Finlayson, M.; Macdonald, D.; Fakolade, A. Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story. Int. J. Environ. Res. Public Health 2025, 22, 946. https://doi.org/10.3390/ijerph22060946
Alqahtani A, Sahely A, Aldersey HM, Finlayson M, Macdonald D, Fakolade A. Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story. International Journal of Environmental Research and Public Health. 2025; 22(6):946. https://doi.org/10.3390/ijerph22060946
Chicago/Turabian StyleAlqahtani, Ashwaq, Ahmad Sahely, Heather M. Aldersey, Marcia Finlayson, Danielle Macdonald, and Afolasade Fakolade. 2025. "Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story" International Journal of Environmental Research and Public Health 22, no. 6: 946. https://doi.org/10.3390/ijerph22060946
APA StyleAlqahtani, A., Sahely, A., Aldersey, H. M., Finlayson, M., Macdonald, D., & Fakolade, A. (2025). Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story. International Journal of Environmental Research and Public Health, 22(6), 946. https://doi.org/10.3390/ijerph22060946