Psychological Experiences and Emotional Impact of Gene Therapy in Genetic Disorder Patients
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Abstract
Gene therapy has emerged as a revolutionary treatment for genetic disorders, offering the potential for long-term cures by addressing the root cause of disease at the genetic level. While clinical studies have focused on the efficacy of gene therapy, there remains limited understanding of the psychological and emotional impacts experienced by patients undergoing such treatments. This study aims to explore the emotional and psychological experiences of patients receiving gene therapy, specifically focusing on how they perceive and adapt to changes in their health status. Using an interpretative phenomenological approach, this research investigates the lived experiences of 12 patients who underwent gene therapy for genetic disorders. Data was collected through semi-structured interviews and analyzed thematically, revealing that while patients initially experience intense hope and relief (reported by 10 out of 12 participants), they also face significant psychological challenges, including heightened anxiety (observed in 8 participants) and profound shifts in personal identity (experienced by 6 participants). These findings suggest that emotional support and holistic care are crucial for enhancing patient well-being during and after gene therapy. However, the study is limited by its relatively small sample size and reliance on self-reported experiences, which may not capture the full diversity of patient perspectives. The study contributes to a deeper understanding of the emotional complexities associated with gene therapy and calls for further research into the psychological effects of medical interventions.
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Aratti, A., & Zampini, L. (2024). Caregiver Burden, Parenting Stress and Coping Strategies: The Experience of Parents of Children and Adolescents with Osteogenesis Imperfecta. Healthcare (Switzerland), 12(10). Scopus. https://doi.org/10.3390/healthcare12101018
Aust, S., Gärtner, M., Basso, L., Otte, C., Wingenfeld, K., Chae, W. R., Heuser-Collier, I., Regen, F., Cosma, N. C., van Hall, F., Grimm, S., & Bajbouj, M. (2019). Anxiety during ketamine infusions is associated with negative treatment responses in major depressive disorder. European Neuropsychopharmacology, 29(4), 529–538. Scopus. https://doi.org/10.1016/j.euroneuro.2019.02.005
Baker, E. R., Huang, R., Liu, Q., & Battista, C. (2021). Children’s Poverty Exposure and Hot and Cool Executive Functions: Differential Impacts of Parental Financial Strain. Journal of Cognition and Development, 22(1), 1–21. Scopus. https://doi.org/10.1080/15248372.2020.1853125
Barras, A., & Frith, H. (2024). ‘Cos not everyone wants to talk, they prefer to do, to move’: Circuits of trans embodied pleasure and inclusion in sport and physical exercise. Sport, Education and Society, 29(9), 1070–1084. Scopus. https://doi.org/10.1080/13573322.2023.2266755
Camilleri, S., Swainston, K., & MacGregor, F. (2023). A qualitative exploration of the experiences of post-mortem forensic imaging in Malta: A psychological perspective. Radiography, 29(1), 84–89. Scopus. https://doi.org/10.1016/j.radi.2022.10.007
Chamsi, A., Ezzaairi, F., Sahli, J., Belaid, I., Ammar, N., Bourigua, R., Hochlaf, M., Ben Fatma, L., Chabchoub, I., & Ben Ahmed, S. (2023). Assessment of depression, anxiety and fatigue in Tunisian patients in recovery from colon cancer and their impact on quality of life. Journal of Cancer Research and Clinical Oncology, 149(8), 4269–4274. Scopus. https://doi.org/10.1007/s00432-022-04334-1
Chuang, H.-C., Tseng, H.-Y., & Tang, D.-L. (2023). An eye tracking study of the application of gestalt theory in photography. Journal of Eye Movement Research, 16(1). Scopus. https://doi.org/10.16910/JEMR.16.1.5
Clair, R. P. (2003). Expressions of ethnography: Novel approaches to qualitative methods (p. 303). State University of New York Press; Scopus. https://www.scopus.com/inward/record.uri?eid=2-s2.0-84896556900&partnerID=40&md5=d14cc6ba1608309f0398c418b0c86e4b
Clifton, V. L., Kumar, S., Borg, D., Rae, K. M., Boyd, R. N., Whittingham, K., Moritz, K. M., Carter, H. E., McPhail, S. M., Gannon, B., Ware, R., Dixson, B. J. W., Bora, S., & Hurst, C. (2022). Associations between COVID-19 lockdown and post-lockdown on the mental health of pregnant women, postpartum women and their partners from the Queensland family cohort prospective study. BMC Pregnancy and Childbirth, 22(1). Scopus. https://doi.org/10.1186/s12884-022-04795-9
Dang, P., Grover, N., Srivastava, P., Chahal, S., Aggarwal, A., Dhiman, V., & Kaloiya, G. (2021). A qualitative study of the psychological experiences of health care workers during the COVID 19 pandemic. Indian Journal of Social Psychiatry, 37(1), 93–97. Scopus. https://doi.org/10.4103/ijsp.ijsp_181_20
de C Williams, A. C., & McGrigor, H. (2024). A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis. BMC Women’s Health, 24(1). Scopus. https://doi.org/10.1186/s12905-023-02874-3
Dotto, C., Montanaro, M., Spaggiari, S., Cecinati, V., Brescia, L., Insogna, S., Zuliani, L., Grotto, P., Pizzato, C., & Di Riso, D. (2022). Early Evidence of the Interplay between Separation Anxiety Symptoms and COVID-19-Related Worries in a Group of Children Diagnosed with Cancer and Their Mothers. Children, 9(4). Scopus. https://doi.org/10.3390/children9040481
Edwards, J. D., Panitch, H. B., Nelson, J. E., Miller, R. L., & Morris, M. C. (2020). Decisions for long-term ventilation for children perspectives of family members. Annals of the American Thoracic Society, 17(1), 72–80. Scopus. https://doi.org/10.1513/AnnalsATS.201903-271OC
Fennie, T., Moletsane, M., & Padmanabhanunni, A. (2021). Adolescents’ experiences of menarche and menstruation in disadvantaged schools in South Africa: A qualitative exploration. Health Education, 121(4), 408–419. Scopus. https://doi.org/10.1108/HE-12-2020-0122
Fernandez-Pineda, M., Swift, A., Dolbier, C., & Banasiewicz, K. G. (2024). Compounding stress: A mixed-methods study on the psychological experience of miscarriage amid the COVID-19 pandemic. BMC Pregnancy and Childbirth, 24(1). Scopus. https://doi.org/10.1186/s12884-024-06610-z
Fife, W. (2020). Counting as a Qualitative Method: Grappling with the Reliability Issue in Ethnographic Research (p. 140). Springer International Publishing; Scopus. https://doi.org/10.1007/978-3-030-34803-8
Fung, H. W., Liu, C., Yuan, G. F., Liu, J., Zhao, J., Chien, W. T., Lee, V. W. P., Shi, W., & Lam, S. K. K. (2023). Association Among Negative Life Events, Sense of Security, and Depressive Symptoms in Chinese Adolescents After the 2013 Ya’an Earthquake. Disaster Medicine and Public Health Preparedness, 17(10). Scopus. https://doi.org/10.1017/dmp.2022.300
Ibrahim, A. M., Aljohani, W. F., Mohamed, I. A., Zaghamir, D. E. F., Mohamed, E. I. E., Wahba, N. M. I., Shahin, M. A., Palanivelu, P., Vellaiyan, A., Mohammed, L. Z. G., Ali, R. A. E.-S., & Hassan, G. A. (2024). Characterizing the Physical and Psychological Experiences of Newly Diagnosed Pancreatic Cancer Patients. Asian Pacific Journal of Cancer Prevention, 25(7), 2483–2492. Scopus. https://doi.org/10.31557/APJCP.2024.25.7.2483
Katznelson, H., Daniel, S. I. F., Poulsen, S., Lunn, S., Buhl-Nielsen, B., & Sjögren, J. M. (2021). Disturbances in the experiences of embodiment related to attachment, mentalization and self-objectification in anorexia nervosa. Journal of Eating Disorders, 9(1). Scopus. https://doi.org/10.1186/s40337-021-00463-z
Kawamura, Y. (2020). DOING RESEARCH IN FASHION AND DRESS: An Introduction to Qualitative Methods, 2nd edition (p. 166). Bloomsbury Publishing Plc.; Scopus. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85188589040&partnerID=40&md5=b3db406659cd1ea5b20e05664bec39a3
Kim, M., Park, I.-H., Kang, Y.-S., Kim, H., Jhon, M., Kim, J.-W., Ryu, S., Lee, J.-Y., Kim, J.-M., Lee, J., & Kim, S.-W. (2020). Comparison of Psychosocial Distress in Areas With Different COVID-19 Prevalence in Korea. Frontiers in Psychiatry, 11. Scopus. https://doi.org/10.3389/fpsyt.2020.593105
Lindegaard, T. (2023). Do Psychedelics Facilitate Emergence of Unconscious Psychological Processes? Psychodynamic Psychiatry, 51(3), 270–286. Scopus. https://doi.org/10.1521/pdps.2023.51.3.270
Mayopoulos, G. A., Ein-Dor, T., Dishy, G. A., Nandru, R., Chan, S. J., Hanley, L. E., Kaimal, A. J., & Dekel, S. (2021). COVID-19 is associated with traumatic childbirth and subsequent mother-infant bonding problems. Journal of Affective Disorders, 282, 122–125. Scopus. https://doi.org/10.1016/j.jad.2020.12.101
McConville, A., Noser, A. E., Nelson, E.-L., Clements, M. A., Majidi, S., & Patton, S. R. (2020). Depression as a predictor of hypoglycemia worry in parents of youth with recent-onset type 1 diabetes. Pediatric Diabetes, 21(5), 909–916. Scopus. https://doi.org/10.1111/pedi.13039
Miller, I. S. (2019). DOUBLINGS BETWEEN BEWILDERMENT AND ENLIGHTENMENT: READING FREUD WITH HEINE ON THE TROUBLED IDENTITY OF HIRSCH–HYACINTH. American Journal of Psychoanalysis, 79(1), 17–39. Scopus. https://doi.org/10.1057/s11231-019-09177-3
Mohammadi, S., Shojaei, K., Maraghi, E., & Motaghi, Z. (2023). Care Providers’ Perspectives on Quality Prenatal Care in High-risk Pregnancies: A Qualitative Study. International Journal of Community Based Nursing and Midwifery, 11(2), 122–134. Scopus. https://doi.org/10.30476/IJCBNM.2023.97603.2192
Mohta, R., & Halder, S. (2021). A comparative study on cognitive, emotional, and social functioning in adolescents with and without smartphone addiction. Journal of Indian Association for Child and Adolescent Mental Health, 17(4), 44–65. Scopus.
Murray, C. D., Havlin, H., & Molyneaux, V. (2024). Considering the psychological experience of amputation and rehabilitation for military veterans: A systematic review and metasynthesis of qualitative research. Disability and Rehabilitation, 46(6), 1053–1072. Scopus. https://doi.org/10.1080/09638288.2023.2182915
Ng, B. H., Abeed, N. N. N., Hamid, M. F. A., Soo, C. I., Low, H. J., Kori, N., Periyasamy, P., Mustafa, N., & Yu-Lin, A. B. (2020). A descriptive study of the psychological experience of health care workers in close contact with a person with covid-19. Medical Journal of Malaysia, 75(5), 485–489. Scopus.
Pharasi, S., & Patra, S. (2020). Burnout in medical students of a tertiary care Indian medical center: How much protection does resilience confer? Indian Journal of Psychiatry, 62(4), 407–412. Scopus. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_681_19
Picardi, A., Miniotti, M., Leombruni, P., & Gigantesco, A. (2021). A Qualitative Study Regarding COVID-19 Inpatient Family Caregivers’ Need for Supportive Care. Clinical Practice and Epidemiology in Mental Health, 17, 161–169. Scopus. https://doi.org/10.2174/1745017902117010161
Scalia, G., Priola, S. M., Ranganathan, S., Venkataram, T., Orestano, V., Marrone, S., Chaurasia, B., Maugeri, R., Iacopino, D. G., Strigari, L., Salvati, M., & Umana, G. E. (2024). Assessing the impact of mixed reality-assisted informed consent: A study protocol. Surgical Neurology International, 15. Scopus. https://doi.org/10.25259/SNI_1021_2023
Sun, N., Wei, L., Shi, S., Jiao, D., Song, R., Ma, L., Wang, H., Wang, C., Wang, Z., You, Y., Liu, S., & Wang, H. (2020). A qualitative study on the psychological experience of caregivers of COVID-19 patients. American Journal of Infection Control, 48(6), 592–598. Scopus. https://doi.org/10.1016/j.ajic.2020.03.018
van Lier, H. G., Noordzij, M. L., Pieterse, M. E., Postel, M. G., Vollenbroek-Hutten, M. M. R., de Haan, H. A., & Schraagen, J. M. C. (2022). An ideographic study into physiology, alcohol craving and lapses during one hundred days of daily life monitoring. Addictive Behaviors Reports, 16. Scopus. https://doi.org/10.1016/j.abrep.2022.100443
Wang, J.-Y., Wei, L.-L., Li, H.-T., Zhang, Y., Li, Q.-Q., Pan, Y.-S., Wang, G., & Wei, H. (2022). A Qualitative Exploration of the Psychological Experience of Patients Hospitalized with COVID-19. Holistic Nursing Practice, 36(1), 37–45. Scopus. https://doi.org/10.1097/HNP.0000000000000491
Warren, A. M., Bennett, M., Danesh, V., Waddimba, A., Tovar, M., Gottlieb, R. L., & Powers, M. B. (2021). Early psychological health outcomes among United States healthcare professionals, essential workers, and the general population during the COVID-19 pandemic: The influence of occupational status. Psychiatry Research Communications, 1(2). Scopus. https://doi.org/10.1016/j.psycom.2021.100005
Waterman, S., Cole, C. L., Greenberg, N., Rubin, G. J., & Beck, A. (2019). A qualitative study assessing the feasibility of implementing a group cognitive-behavioural therapy-based intervention in Sierra Leone. BJPsych International, 16(2), 31–34. Scopus. https://doi.org/10.1192/bji.2018.7
Wen, F.-H., Chou, W.-C., Hou, M.-M., Su, P.-J., Shen, W.-C., Chen, J.-S., Chang, W.-C., & Tang, S. T. (2021). Depressive-Symptom Trajectories From End-of-Life Caregiving Through the First 2 Bereavement Years for Family Caregivers of Advanced Cancer Patients. Journal of Pain and Symptom Management, 62(4), 699–708. Scopus. https://doi.org/10.1016/j.jpainsymman.2021.03.018
wube, T. B., Asgedom, S. G., Mengesha, A. G., Bekele, Y. A., & Gebrekirstos, L. G. (2025). Behind the Healing: Exploring the Psychological Battles of Kidney Transplant Patients: A Qualitative Insight. Health Science Reports, 8(2). Scopus. https://doi.org/10.1002/hsr2.70511
Zhan, H., Zheng, C., Zhang, X., Yang, M., Zhang, L., & Jia, X. (2021). Chinese College Students’ Stress and Anxiety Levels Under COVID-19. Frontiers in Psychiatry, 12. Scopus. https://doi.org/10.3389/fpsyt.2021.615390