Lived Experience of Carers of Children with Cerebral Palsy
DOI:
https://doi.org/10.64397/nepj.v01i03.2026.a34Keywords:
experiences, challenges, carers, cerebral palsyAbstract
Introduction: Cerebral palsy remains a leading cause of childhood disability, yet research and healthcare systems have largely centered on the child, often overlooking the lived realities of carers who provide sustained, complex care. In the Philippine context, despite existing policies supporting persons with disabilities, gaps in implementation leave many carers navigating significant emotional, physical, and financial burdens with limited institutional support. This study is grounded in the need to move beyond quantitative measures of caregiver burden and instead capture the depth, meaning, and human experience of caregiving through a qualitative lens. Notably, there is a lack of local qualitative studies that deeply explore the lived experiences of carers, creating a critical gap in understanding their realities, challenges, and coping mechanisms. By addressing this gap, the study highlights how carers adapt, endure, and find meaning in their roles, offering a more holistic perspective of caregiving. Ultimately, it aims to inform more responsive, culturally relevant, and family-centered nursing care, while advocating for policies and support systems that recognize carers not merely as extensions of the patient, but as individuals whose well-being is essential to holistic health outcomes.
Aim: This study sought to explore the lived experiences of carers of children with CP and identify the challenges they encounter.
Methods: A descriptive phenomenological approach underpinned by a constructivist perspective was employed. Purposive and snowball sampling were used to recruit 13 participants from four institutional care facilities in Baguio City, Philippines. Data were collected through semi-structured interviews and analyzed using Colaizzi’s method. Ethical approval was obtained from the Saint Louis University Research Ethics Committee, and ethical considerations were ensured in accordance with the Philippine Health Research Ethics Board (PHREB) guidelines.
Results: Four major themes emerged from the analysis. First, “Odyssey of Caring,” highlights the emotional journey carers undergo, from the initial diagnosis shock to ongoing adaptation. “Encountering Endeavors” describes the adjustments carers make in their careers, social lives, and daily routines, alongside the emotional, physical, and financial hardships they endure. “Courage in the Surge,” reveals coping strategies such as seeking strength in solace, family, faith, and digital platforms. Lastly, “Living with Purpose” reflects how carers find meaning and resilience through love, personal passion, and hope for their children’s progress.
Conclusion: In conclusion, caring for children with CP is a demanding, complex journey. To alleviate carers’ burdens, government agencies must ensure accessible, consistent support services such as respite care and rehabilitation, complementing existing policies to better meet carers’ needs.
References
1. Adeoye, M. A. (2023). Review of sampling techniques for education. ASEAN Journal for Science Education. https://ejournal.bumipublikasinusantara.id/index.php/ajsed/article/view/230/214
2. Alsamiri YA, Alaghdaf AA, Alsawalem IM, Allouash BA and Alfaidi SD (2024) Mothers of children with disabilities: exploring lived experiences, challenges, and divorce risk. Front. Psychol. 15:1399419. doi: 10.3389/fpsyg.2024.1399419
3. Ataro, G. (2020). Methods, methodoloigical challenges and lessons learned from phenomenological study about OSCE experience: Overview of paradigm-driven qualitative approach in medical education. Annals of Medicine and Surgery, 49, 12-23.
4. Al-Blowi, A. A., Al-Mutairi, R. A., Ghabbany, R. M., Manaa, A. M., Aloufi, M. M., Ternati, G. K., Al-Raddady, B. H., & Al-Rufai, A. (2020). The prevalence of malnutrition and the nutritional status in children with cerebral palsy and its causes in Madinah Maternity and Children Hospital. Current Pediatric Research, 24(5), 273–280. https://www.alliedacademies.org/articles/the-prevalence-of-malnutrition-and-the-nutritional-status-in-children-with-cerebral-palsy-and-its-causes-in-madinah-mate.pdf
5. Andromeda, A., Hartini, N., & Suryanto, S. (2023). Reassuring the prevalence of cerebral palsy in Asian children and adolescents. Jurnal Kesehatan Masyarakat 19(1), 42–52. https://doi.org/10.15294/kemas.v19i1.37540
6. Baena, S., Jiménez, L., Bejarano, S., & Hidalgo, V. (2024). Perceived impact, needs, and resources of grandparents of children and adolescents on the autism Spectrum: a Qualitative study. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06537-6
7. Baguio City Public Information Office, 2022. A Walk to a Healthy and Happy Family. https://www.facebook.com/share/p/1Qnzbrnuec/
8. Baidoo, G. (2023). Quality of life of caregivers of children with cerebral palsy at hearts, hands and voice foundation, winneba. http://41.74.91.244:8080/handle/123456789/3832
9. Bamber, M. D., Mahony, H., & Spratling, R. (2023). Mothers of Children with Special Health Care Needs: Exploring caregiver burden, quality of life, and resiliency. Journal of Pediatric Health Care, 37(6), 643–651. https://doi.org/10.1016/j.pedhc.2023.06.003
10. Başaran, A., Kilinç, Z., Sari, H., & Gündüz, E. (2023). Etiological risk factors in children with cerebral palsy. Medicine, 102(15), e33479. https://doi.org/10.1097/md.0000000000033479
11. Bujnowska, A. M., Rodríguez, C., García, T., Areces, D., & Marsh, N. V. (2021). Coping with stress in parents of children with developmental disabilities. International journal of clinical and health psychology : IJCHP, 21(3), 100254. https://doi.org/10.1016/j.ijchp.2021.100254
12. Chauhan, R. S. (2019). Unstructured interviews: are they really all that bad? Human Resource Development International, 25(4), 474–487. https://doi.org/10.1080/13678868.2019.1603019
13. Chiluba, B.C., Moyo, G. (2017). Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia. BMC Res Notes, 10, 724. https://doi.org/10.1186/s13104-017-3011-0
14. Colaizzi, P.F.. (1978). Psychological Research as the Phenomenologist Views It. Existential Phenomenological Alternatives for Psychology, Oxford University Press, New York, 48-71.
15. Cook, J. E., Tovin, M. M., & Kenyon, L. K. (2021). Understanding the lived experience of caring for a child with severe cerebral palsy: a critical step toward Psychologically Informed Family-Centered Care. Physical Therapy, 102(4). https://doi.org/10.1093/ptj/pzab294
16. Creswell, J.W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches (4th ed.). SAGE Publications
17. Department of Social Welfare and Development (2011). Number of Poor Households (HHs) by Type of Disability. National Household Targeting System for Poverty Reduction. National Council on Disability Affairs. https://ncda.gov.ph/wp-content/uploads/2011/06/Disability-Stats-Summary-per-Region-Province-and-CityMunici.xls
18. Dlamini, M. D., Chang, Y.-J., & Nguyen, T. T. B. (2023). Caregivers' experiences of having a child with cerebral palsy. A meta-synthesis. 73, 157-168. https://doi.org/10.1016/j.pedn.2023.08.026
19. Edward, K., & Welch, T. (2011). The extension of Colaizzi’s method of phenomenological enquiry. Contemporary Nurse, 39(2), 163–171. https://doi.org/10.5172/conu.2011.39.2.163
20. Fafolahan, A. O., Davis, A. O., Sodipo, O. P., Taimiyu, O. M., Ogunmola, M. O., Emmanuel, A., Usman, B. E., & Titi, O. (2024). Cerebral palsy risk in relation to parental age: insights from a matched case-control study. Bulletin of Faculty of Physical Therapy, 29(1). https://doi.org/10.1186/s43161-024-00182-x
21. Flanagan, J. M., & Tatano, C. (2024). Polit and Beck’s nursing research: Generating and assessing evidence for nursing practice. LWW.
22. Galal Abdelrahman, R., Ibrahim El-Malky, M., & Mohamed Barakat, M. (2022). Psychological Distress and Coping Strategies among Parents with disabilities. Journal of Nursing Science Benha University, 3(1), 637-651. doi: 10.21608/jnsbu.2022.215179
23. Garrido-Ardila, E. M., Caro-Puertolas, B., Jiménez-Palomares, M., Montanero-Fernández, J., Rodríguez-Domínguez, T., & Rodríguez-Mansilla, J. (2021). Orthopaedic Disorders in Cerebral Palsy in International Cooperation Projects: A Descriptive Cross-Sectional Study. International Journal of Environmental Research and Public Health, 18(15), 7872. https://doi.org/10.3390/ijerph18157872
24. Haki, U., & Prahastiwi, E. D. (2024). Strategi Pengumpulan dan Analisis Data dalam Penelitian Kualitatif Pendidikan. 3(1), 1-19. https://doi.org/10.46306/jurinotep.v3i1.67
25. Hennink, M., & Kaiser, B. N. (2021). Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Social Science & Medicine, 292, 114523. https://doi.org/10.1016/j.socscimed.2021.114523
26. Kelly, M. (2010). Who cares. . .. . .. . .. . .For the carers? Journal of Renal Care, 36(1), 16–20. https://doi.org/10.1111/j.1755-6686.2010.00139.x
27. Morgan, C., Badawi, N., & Novak, I. (2023). “A Different Ride”: A Qualitative Interview Study of Parents’ Experience with Early Diagnosis and Goals, Activity, Motor Enrichment (GAME) Intervention for Infants with Cerebral Palsy. Journal of Clinical Medicine, 12(2), 583. https://doi.org/10.3390/jcm12020583
28. Larasati, K., & Affandi, G. R. (2020). Resilience Dynamics of Mothers Who Have Children with Cerebral Palsy. https://doi.org/10.21070/ICECRS2020542
29. Lasco, G., Nuevo, C., Lauren, M., Nolasco, P., Rose, F., Famaloan, A., Bundoc, J., Capili, D., & Bermejo, R. (2021). “It’s as if I’m the one suffering”: Narratives of Parents of Children with Disability in the Philippines. Acta Medica Philippina. https://doi.org/10.47895/amp.vi0.658
30. Lim, W. M. (2024). What is qualitative research? An overview and guidelines. Australasian Marketing Journal (AMJ). https://doi.org/10.1177/14413582241264619
31. Lima, M. B. S., Ramos, E. M. L. S., Pontes, F. a. R., & Da Costa Silva, S. S. (2021). Cerebral palsy: parental stress of caregivers. Psico-USF, 26(2), 357–368. https://doi.org/10.1590/1413-82712021260213
32. Maronga-Feshete, F., Pilusa, S., & Dreyer, A. (2024). I'm proud of my son with CP': Cerebral palsy caregivers' experiences, Gauteng province. African Journal of Disability, 13. https://doi.org/10.4102/ajod.v13i0.1357
33. McGrane, C., Masson, N., & Martins, D. C. (2021). A group respite pilot project for children with special needs. Public Health Nursing, 38(6), 1009–1014. https://doi.org/10.1111/phn.12957
34. Metin Karaaslan, M., & Altay, G. (2024). The levels of care burden, compassion, and compassionate love of parents with and without children with special needs: Case-control studies. Life Span and Disability, 27(1), 7–20. https://doi.org/10.57643/lsadj.2024.27.1_01
35. Metz, C., Jaster, M., Walch, E., Sarpong-Bengelsdorf, A., Kaindl, A. M., & Schneider, J. (2021). Clinical phenotype of cerebral palsy depends on the cause: Is it really cerebral palsy? A retrospective study. Journal of Child Neurology, 37(2), 112–118. https://doi.org/10.1177/08830738211059686
36. Monday, T. U. (2020). Impacts of Interview as research instrument of data collection in Social Sciences. Journal of Digital Art & Humanities, 1(1), 15–24. https://doi.org/10.33847/2712-8148.1.1_2
37. Muzayyanah, N., & Huda, N. E. A. (2023). The special parents for special children: A qualitative study. Psychological Journal Science and Practice, 3(2), 191–198. https://doi.org/10.22219/pjsp.v3i2.27985
38. Mwinbam, Mavis & Suglo, Joseph & Agyeman, Yaa & Kukeba, Margaret. (2023). Family caregivers’ experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatrics Open. 7. e001807. 10.1136/bmjpo-2022-001807.
39. Namasaba, M., Kazembe, N., Seera, G., & Baguwemu, A. A. (2022). Broadening the scope of social support, coping skills and resilience among caretakers of children with disabilities in Uganda: a sequential explanatory mixed-methods study. BMC Public Health, 22(1). https://doi.org/10.1186/s12889-022-13018-x
40. Nasir, M. N. A., Efendi, A. N. a. E., & Hussain, R. B. M. (2019). Assessing the situation of disability research in the Philippines: An exploratory study. Journal of Disability Research, 16(8), 1–11.
41. National Council on Disability Affairs (2024). Total Number of Persons with Disabilities per Geographical Region. https://ncda.gov.ph/
42. National Privacy Comission. (2023). Guidelines on Consent. https://privacy.gov.ph/wp-content/uploads/2023/11/NPC-Circular-No.-2023-04_Guidelines-on-Consent_07Nov2023.pdf
43. Ni, Z. H., Ding, S., Wu, J. H., Zhang, S., & Liu, C. Y. (2022). Family caregivers’ experiences of caring for children with cerebral palsy in China: a qualitative descriptive study. INQUIRY: The Journal of Health Care Organization Provision and Financing, 59. https://doi.org/10.1177/00469580221121510
44. Oranga, J., & Matere, A. (2023). Qualitative Research: Essence, types and Advantages. Open Access Library Journal, 10(12), 1–9. https://doi.org/10.4236/oalib.1111001
45. Ostojic, K., Karem, I., Paget, S., Mimmo, L., Berg, A., Scott, T., Burnett, H., McIntyre, S., Smithers-Sheedy, H., Azmatullah, S., Calderan, J., Mohamed, M., Olaso, A., Van Hoek, D., Van Hoek, M., Woodbury, M., Wilkinson, A., Henry, G., Shiva, S., … Woolfenden, S. (2024). A qualitative study investigating the experiences of unmet social needs for children with cerebral palsy and their families: perspectives of parents and clinicians. https://www.semanticscholar.org/paper/A-qualitative-study= investigating-the-experiences-Ostojic-Karem/. 170213b2d56e6d3bdd6123af1bad10f64a724c52
46. Panda, S., Singh, A., Kato, H., & Kokhanov, A. (2024). Cerebral Palsy: a Current perspective. NeoReviews, 25(6), e350–e360. https://doi.org/10.1542/neo.25-6-e350
47. Patel, D. R., Neelakantan, M., Pandher, K., & Merrick, J. (2020). Cerebral palsy in children: a clinical overview. Translational Pediatrics, 9(S1), S125–S135. https://doi.org/10.21037/tp.2020.01.01
48. Philippine Statistics Authority (2013). Persons with Disability in the Philippines (Results from the 2010 Census) https://www.medbox.org/index.php/dl/5e148832db60a2044c2d5a39#:~:text=Of%20the%2092.1%20million%20household,percent%20of%20the%20household%20population.
49. Pillitteri, A. (2014) Maternal and Child Health Nursing: Care of the Childbearing and Childrearing Family. 7th Edition, Wolters Kluwer/Lippincott Williams and Wilkins, Philadelphia.
50. Polit, D. F., & Beck, C. T. (2021). Nursing research: Generating and assessing evidence for nursing practice (11th ed.). Wolters Kluwer.
51. Rana, K., Poudel, P., & Chimoriya, R. (2023). Qualitative Methodology in Translational Health Research: Current practices and future directions. Healthcare, 11(19), 2665. https://doi.org/10.3390/healthcare11192665
52. Raphulu, P., Shirindi, M. L., & Makofane, M. D. (2021). Mothers caring for children living with cerebral palsy: suggestions for psycho-social support. Social Work/Maatskaplike Werk, 57(3), 359. https://doi.org/10.15270/57-3-952
53. Rohmi, F., Yusuf, A., Fitriasari, R., & Agustinus, H. (2023). What Benefits Might a Family Expect From Using Spiritual Coping Mechanisms When Providing Care for People With Schizophrenia? Literature Review. SAGE open nursing, 9, 23779608231214935. https://doi.org/10.1177/23779608231214935
54. Romano, M., Lorio, C., Delehanty, A., Eugenio, J., Abarca, D., Trivedi, B., & Brown, J. A. (2022). Family Routines Within Caregiver-Implemented Early Interventions: A Scoping Review. Journal of Early Intervention, 44(4), 371-392. https://doi.org/10.1177/10538151211062206
55. Sabetsarvestani, R., Köse, S., Canbal, A., & Geckil, E. (2023). The experiences and coping mechanisms of mothers caring for a child with cerebral palsy. Women & Health, 63(6), 425-435. https://doi.org/10.1080/03630242.2023.2223682
56. Sadowska, M., Sarecka-Hujar, B., & Kopyta, I. (2020). Cerebral Palsy: current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatric Disease and Treatment, Volume 16, 1505–1518. https://doi.org/10.2147/ndt.s235165
57. Sanders, C. (2003). Application of Colaizzi’s method: interpretation of an auditable decision trail by a novice researcher. Contemporary Nurse, 14(3), 292–302. https://doi.org/10.5172/conu.14.3.292
58. Sharma, M. K., Anand, N., Roopesh, B. N., & Sunil, S. (2022). Digital resilience mediates healthy use of technology. The Medico-legal journal, 90(4), 195–199. https://doi.org/10.1177/00258172211018337
59. Tenny, S., Brannan, J. M., & Brannan, G. D. (2022). Qualitative Study. In StatPearls. StatPearls Publishing.
60. Vadivelan, K., Sekar, P., Sruthi, S. S., & Gopichandran, V. (2020). Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC public health, 20(1), 645. https://doi.org/10.1186/s12889-020-08808-0
61. Victorio, M. C. (2025). Cerebral palsy (CP). In Merck Manual Professional Edition. Merck & Co., Inc.
62. Zotomayor, M. D. (2024). Measures of Function in Physical therapy Assessment of children with Cerebral palsy: a Clinical audit. Philippine Journal of Physical Therapy, 3(1), 21–30. https://doi.org/10.46409/002.xaxb509
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