Lived Experiences of Stem Cell Therapy for Degenerative Diseases
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Abstract
Stem cell research and therapies have emerged as a central domain in regenerative medicine, offering new possibilities for treating degenerative diseases that profoundly affect patients’ quality of life. While existing knowledge has largely focused on biological mechanisms, clinical efficacy, and safety, less attention has been given to how patients subjectively experience and interpret these therapies within their everyday lives. What remains insufficiently understood is how patients make meaning of hope, uncertainty, identity, and decision-making while undergoing stem cell therapy, prompting the question of how this therapy is lived and understood beyond clinical outcomes. Here, an interpretative phenomenological approach is used to explore and elucidate the essence of patients’ lived experiences of stem cell therapy for degenerative diseases. This qualitative study involved 12 patients diagnosed with degenerative diseases who had undergone stem cell therapy at a tertiary referral hospital. Data were collected through in-depth, semi-structured interviews lasting 60–90 minutes, conducted between March and July 2025, and were audio-recorded and transcribed verbatim. Data were generated through in-depth, semi-structured interviews with patients and analyzed using Interpretative Phenomenological Analysis to capture experiential meanings. The findings reveal that stem cell therapy is experienced as a complex process marked by the coexistence of hope and uncertainty, negotiated trust in science and clinicians, shifts in bodily perception and identity, and ethically reflective decision-making. These themes demonstrate how patients actively construct meaning as they engage with an experimental therapeutic intervention. The study advances understanding of stem cell therapy by foregrounding patient experience and highlights important implications for patient-centered care, ethical clinical practice, and future qualitative research in regenerative medicine.
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References
Abdel-Sater, K. A. (2025). From Ageing Biology to Alzheimer’s Therapy: Integrating Geroscience, Lifestyle and Pharmacological Strategies. touchREVIEWS in Neurology, 21(1), 5–13. Scopus. https://doi.org/10.17925/USN.2025.21.1.10
Al-Massri, K. F., Ahmed, L. A., & El-Abhar, H. S. (2020). Mesenchymal stem cells in chemotherapy-induced peripheral neuropathy: A new challenging approach that requires further investigations. Journal of Tissue Engineering and Regenerative Medicine, 14(1), 108–122. Scopus. https://doi.org/10.1002/term.2972
Badge, A. K., Pandey, T., Bankar, N. J., Singh, B. R., Gogle, D., & Noman, O. (2025). Advancing Stem Cell Transplantation Therapy with High-resolution Three-dimensional Multicolor Holography for Improved Graft Delivery and Vascular Mapping. Indian Journal of Transplantation, 19(4), 518–520. Scopus. https://doi.org/10.4103/ijot.ijot_50_25
Barbon, S., Rajendran, S., Bertalot, T., Piccione, M., Gasparella, M., Parnigotto, P. P., Di Liddo, R., & Conconi, M. T. (2021). Growth and Differentiation of Circulating Stem Cells After Extensive Ex Vivo Expansion. Tissue Engineering and Regenerative Medicine, 18(3), 411–427. Scopus. https://doi.org/10.1007/s13770-021-00330-7
Berdowski, W. M., van der Linde, H. C., Breur, M., Oosterhof, N., Beerepoot, S., Sanderson, L., Wijnands, L. I., de Jong, P., Tsai-Meu-Chong, E., de Valk, W., de Witte, M., van Ijcken, W. F. J., Demmers, J., van der Knaap, M. S., Bugiani, M., Wolf, N. I., & van Ham, T. J. (2022). Dominant-acting CSF1R variants cause microglial depletion and altered astrocytic phenotype in zebrafish and adult-onset leukodystrophy. Acta Neuropathologica, 144(2), 211–239. Scopus. https://doi.org/10.1007/s00401-022-02440-5
Bhartiya, M., Kumar, A., Singh, R. K., Radhakrishnan, D. M., Rajan, R., & Srivastava, A. K. (2023). Mesenchymal Stem Cell Therapy in the Treatment of Neurodegenerative Cerebellar Ataxias: A Systematic Review and Meta-analysis. Cerebellum, 22(3), 363–369. Scopus. https://doi.org/10.1007/s12311-022-01403-6
Cheng, Y.-W., Yang, L.-Y., Chen, Y.-T., Chou, S.-C., Chen, K.-W., Chen, Y.-H., Deng, C.-R., Chen, I.-C., Chou, W.-J., Chang, C.-C., Chen, Y.-R., Hwa, H.-L., Wang, K.-C., & Kuo, M.-F. (2024). Endothelial progenitor cell-derived conditioned medium mitigates chronic cerebral ischemic injury through macrophage migration inhibitory factor-activated AKT pathway. Stem Cell Research and Therapy, 15(1). Scopus. https://doi.org/10.1186/s13287-024-04015-5
Guo, N., Huang, W., Huang, J., Liu, Y., Zhu, K., & Gao, W. (2025). Global research trends in biomarkers, therapeutic targets, and drugs for amyotrophic lateral sclerosis: A bibliometric and visualization analysis. Frontiers in Pharmacology, 16. Scopus. https://doi.org/10.3389/fphar.2025.1588968
Haghighat, M., Iranbakhsh, A., Baharara, J., Ebadi, M., & Sotoodehnejadnematalahi, F. (2021). Effect of β-carotene on the differentiation potential of ciliary epithelium-derived MSCs isolated from mouse eyes on alginate-based scaffolds. Experimental Eye Research, 202. Scopus. https://doi.org/10.1016/j.exer.2020.108346
Hamam, G., Bahaa, N., & Raafat, M. (2023). Can intranasal administration of adipose-derived stem cells reach and affect the histological structure of distant organs of aged wistar rat? Journal of Microscopy and Ultrastructure, 11(1), 1–11. Scopus. https://doi.org/10.4103/jmau.jmau_78_20
He, L., Wang, S., Peng, L., Zhao, H., Li, S., Han, X., Habimana, J. D., Chen, Z., Wang, C., Peng, Y., Peng, H., Xie, Y., Lei, L., Deng, Q., Wan, L., Wan, N., Yuan, H., Gong, Y., Zou, G., … Jiang, H. (2021). CRISPR/Cas9 mediated gene correction ameliorates abnormal phenotypes in spinocerebellar ataxia type 3 patient-derived induced pluripotent stem cells. Translational Psychiatry, 11(1). Scopus. https://doi.org/10.1038/s41398-021-01605-2
Huang, L., Zhao, Z., Wen, J., Ling, W., Miao, Y., & Wu, J. (2020). Cellular senescence: A pathogenic mechanism of pelvic organ prolapse (Review). Molecular Medicine Reports, 22(3), 2155–2162. Scopus. https://doi.org/10.3892/mmr.2020.11339
Izadyari Aghmiuni, A. I., Keshel, S. H., Rahmani, A., Nadri, S., Sefat, F., & Lashey, A. (2023). Retinal Tissue Engineering: Regenerative and Drug Delivery Approaches. Current Stem Cell Research and Therapy, 18(5), 608–640. Scopus. https://doi.org/10.2174/1574888X17666220621153508
Kamaldinov, T., Erndt-Marino, J., Levin, M., Kaplan, D. L., & Hahn, M. S. (2020). Assessment of Enrichment of Human Mesenchymal Stem Cells Based on Plasma and Mitochondrial Membrane Potentials. Bioelectricity, 2(1), 21–32. Scopus. https://doi.org/10.1089/bioe.2019.0024
Karimi, M., Maghsoud, Z., & Halabian, R. (2021). Effect of Preconditioned Mesenchymal Stem Cells with Nisin Prebiotic on the Expression of Wound Healing Factors Such as TGF-β1, FGF-2, IL-1, IL-6, and IL-10. Regenerative Engineering and Translational Medicine, 7(1), 30–40. Scopus. https://doi.org/10.1007/s40883-021-00194-2
Kehrer, C., Bevot, A., Martin, P., Raabe, C., Gregor, S., Krägeloh-Mann, I., & Groeschel, S. (2025). Healthcare utilization and disease burden in children with metachromatic leukodystrophy in Germany. Orphanet Journal of Rare Diseases, 20(1). Scopus. https://doi.org/10.1186/s13023-025-03637-z
Kim, I.-K., Park, J.-H., Kim, B., Hwang, K.-C., & Song, B.-W. (2021). Recent advances in stem cell therapy for neurodegenerative disease: Three dimensional tracing and its emerging use. World Journal of Stem Cells, 13(9), 1215–1230. Scopus. https://doi.org/10.4252/wjsc.v13.i9.1215
Lai, W.-F. (2021). Delivery of mesenchymal stem cells for tackling systemic disorders. Current Stem Cell Research and Therapy, 16(6), 640–646. Scopus. https://doi.org/10.2174/1574888X16666210118123724
Li, Q.-Y., Zou, T., Gong, Y., Chen, S.-Y., Zeng, Y.-X., Gao, L.-X., Weng, C.-H., Xu, H.-W., & Yin, Z.-Q. (2021). Functional assessment of cryopreserved clinical grade hESC-RPE cells as a qualified cell source for stem cell therapy of retinal degenerative diseases. Experimental Eye Research, 202. Scopus. https://doi.org/10.1016/j.exer.2020.108305
Li, S., Guan, H., Zhang, Y., Li, S., Li, K., Hu, S., Zuo, E., Zhang, C., Zhang, X., Gong, G., Wang, R., & Piao, F. (2021). Bone marrow mesenchymal stem cells promote remyelination in spinal cord by driving oligodendrocyte progenitor cell differentiation via TNFα/RelB-Hes1 pathway: A rat model study of 2,5-hexanedione-induced neurotoxicity. Stem Cell Research and Therapy, 12(1). Scopus. https://doi.org/10.1186/s13287-021-02518-z
Liu, W., Zhang, C., Jiang, F., Tan, Y., & Qin, B. (2024). From theory to therapy: A bibliometric and visual study of stem cell advancements in age-related macular degeneration. Cytotherapy, 26(6), 616–631. Scopus. https://doi.org/10.1016/j.jcyt.2024.02.022
Mukhlis, L. (2025a). A Phenomenological Study of Personal Spiritual Experiences in Navigating Religious Pluralism within Interfaith Communities. Irfana: Journal of Religious Studies, 1(6), 212–220.
Mukhlis, L. (2025b). Spiritual Grounds for Economic Growth: A Qualitative Exploration of Rural Indonesian Women’s Transformative Journeys Through Mosque-Led Empowerment Programs. Servina: Jurnal Pengabdian Kepada Masyarakat, 1(8), 289–298.
Mukhlis, L., & Abdullah, M. N. (2025). Hukum Keluarga Islam di Indonesia (1st ed.). Mukhlisina Revolution Center.
Mukhlis, L., Arifin, T., Ridwan, A. H., & Zulbaidah. (2024). Integrating Artificial Intelligenceand Maqāṣid al-Syarī‘ah: Revolutionizing Indonesia’s Sharia Online Trading System. Computer Fraud and Security, 2024(11), 301–309. https://doi.org/10.52710/cfs.238
Mukhlis, L., Arifin, T., Ridwan, A. H., & Zulbaidah. (2025). Reorientation of Sharia Stock Regulations: Integrating Taṣarrufāt al-Rasūl and Maqāṣid al-Sharī‘ah for Justice and Sustainability. Journal of Information Systems Engineering and Management, 10(10s), 58–66. https://doi.org/10.52783/jisem.v10i10s.1341
Mukhlis, L., Arifin, T., Ridwan, A. H., Zulbaidah, Rosadi, A., & Solehudin, E. (2025). Reformulation of Islamic Stock Law: The Application of Taṣarrufāt al-Rasūl and Maqāṣid al-Syarī‘ahto Develop a Dynamic and Sustainable Islamic Capital Market in Indonesia. Journal of Posthumanism, 5(3), 1–13. https://doi.org/10.63332/joph.v5i3.913
Mukhlis, L., Janwari, Y., & Syafe`i, R. (2023). INDONESIA STOCK EXCHANGE: THEORETICAL AND PHILOSOPHICAL ANALYSIS OF MUDHARABAH AND MUSYARAKAH CONTRACTS. Yurisprudentia: Jurnal Hukum Ekonomi, 9(2), 243–264. https://doi.org/10.24952/yurisprudentia.v9i2.8466
Mukhlis, L., Maryam, S., & Sormin, S. A. (2023). Model Pembelajaran Living History Berbasis PjBL Untuk Meningkatkan Keterampilan Histografi Mahasiswa. Jurnal Educatio FKIP UNMA, 9(4), 1800–1809. https://doi.org/10.31949/educatio.v9i4.5595
Mukhlis, L., & Saidah, Y. (2025). Dynamics of Nature-Based learning in Developing Children’s Motoricic Skills: Teacher and Parent Perspectives. HUMANISMA: Journal of Gender Studies, 9(1), 64–79. http://dx.doi.org/10.30983/humanisme.v4i2.9366
Mukhlis, L., Suradi, Janwari, Y., & Syafe`i, R. (2023). Sosialisasi Saham Syariah sebagai Instrumen Pengembangan Ekonomi Masyarakat di Badan Kontak Majelis Taklim (BKMT) Kabupaten Mandailing Natal. Jurnal Pengabdian Multidisiplin, 3(2), 2–9. https://doi.org/10.51214/japamul.v3i2.604
Narzisi, A., Halladay, A., Masi, G., Novarino, G., & Lord, C. (2023). Tempering expectations: Considerations on the current state of stem cells therapy for autism treatment. Frontiers in Psychiatry, 14. Scopus. https://doi.org/10.3389/fpsyt.2023.1287879
Olufsen, M. E., Spindler, L., Sørensen, N. B., Christiansen, A. T., Alberti, M., Heegaard, S., & Kiilgaard, J. F. (2022). Controlled Subretinal Injection Pressure Prevents Damage in Pigs. Ophthalmologica, 245(3), 285–293. Scopus. https://doi.org/10.1159/000522110
Perez, A. M., Chau, V. Q., & Sridhar, J. (2024). Medical Accuracy of Reddit in Patient Discussions of Prospective Ocular Stem Cell Therapies for Retinal Degenerative Diseases. Journal of VitreoRetinal Diseases, 8(4), 410–414. Scopus. https://doi.org/10.1177/24741264241246317
Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: A comprehensive review of origins and emerging clinical roles in medical practice. Orthopedic Reviews, 14(3). Scopus. https://doi.org/10.52965/001C.37498
Scopetti, M., Santurro, A., Gatto, V., La Russa, R. L., Manetti, F., D’Errico, S. D., Frati, P., & Fineschi, V. (2020). Mesenchymal stem cells in neurodegenerative diseases: Opinion review on ethical dilemmas. World Journal of Stem Cells, 12(3), 168–177. Scopus. https://doi.org/10.4252/wjsc.v12.i3.168
Shahin, S., Tan, P., Chetsawang, J., Lu, B., Svendsen, S., Ramirez, S., Conniff, T., Alfaro, J. S., Fernandez, M., Fulton, A., Laperle, A. H., Svendsen, C. N., & Wang, S. (2023). Human Neural Progenitors Expressing GDNF Enhance Retinal Protection in a Rodent Model of Retinal Degeneration. Stem Cells Translational Medicine, 12(11), 727–744. Scopus. https://doi.org/10.1093/stcltm/szad054
Williams, K., Foliaki, S. T., Race, B., Smith, A., Thomas, T., Groveman, B. R., & Haigh, C. L. (2023). Neural cell engraftment therapy for sporadic Creutzfeldt-Jakob disease restores neuroelectrophysiological parameters in a cerebral organoid model. Stem Cell Research and Therapy, 14(1). Scopus. https://doi.org/10.1186/s13287-023-03591-2
Wu, C.-C., Lee, Y.-K., Tsai, J.-K., Su, Y.-T., Ho, Y.-C., Chu, T.-H., Chen, K.-T., Chang, C.-L., & Chen, J.-S. (2024). Cholinesterase Inhibitor Reveals Synergistic Potential for Neural Stem Cell-Based Therapy in the 5xFAD Mouse Model of Alzheimer’s Disease. Biologics: Targets and Therapy, 18, 363–375. Scopus. https://doi.org/10.2147/BTT.S489683
Yoo, M., Cho, S., Shin, S., Kim, J.-M., Park, H.-G., Cho, S., Hwang, Y. K., & Park, D. H. (2021). Therapeutic Effect of IL1β Priming Tonsil Derived-Mesenchymal Stem Cells in Osteoporosis. Tissue Engineering and Regenerative Medicine, 18(5), 851–862. Scopus. https://doi.org/10.1007/s13770-021-00350-3
Zhao, L., Shi, H.-Y., Ma, Y.-M., & Liu, J.-W. (2021). Neural stem cell therapy for brain disease. World Journal of Stem Cells, 13(9), 1278–1292. Scopus. https://doi.org/10.4252/wjsc.v13.i9.1278